Blessed & Grateful: Superstars & Camp

We have some exciting, awesome news to share!!

My boy (whom I really can no longer call a boy) has been nominated to be honored in a very special way!!

A few weeks ago I got a call from our Palliative Care Social Worker to share that they would like to nominate Chance to be a part of “The Night of Superstars” in our area!! The Night of Superstars is an event put together by an organization called Ragan’s Hope, and is a night to “celebrate the lives of those that change ours”.

From their website…”Night of Superstars is an “Oscar-like” red-carpet charity event that draws numbers of local celebrities, high-profile personalities, media, and hundreds of guests! This celebration is to honor the accomplishments of 20 amazing children, students and young adults in their respective geographical areas who are affected by varying types of disabling conditions, yet reach far beyond their adversities and excel in areas such as academics, athletics, extracurricular activities, the arts, and community service!”.

Our social worker went on to explain that they thought Chance was the perfect candidate because of his work at Camp Korey, his time with the Youth Advisory Council there at Cook Children’s, and most recently the time he spends working with patients in the music studio there at the hospital…and mostly because he does all of these things with such an incredibly humble spirit. Chance is so incredibly touched, and deeply humbled to be nominated, and we are just incredible proud and so grateful to have him honored in this way!! We will keep everyone posted on when and where this event will be happening, but if you think you might want to be there for it, we do know that the date is September 20^th, and would LOVE LOVE LOVE to have a whole crew of  our people there to share in this honor with us!!! So SAVE THE DATE!!

And there is more…we are cutting it close again this year, but we finally have the go-ahead to get the kids to Camp Korey!!!!

Medically, the last year has been busy, and at times disheartening. All three are struggling, and have been for a little while, and our attempts to get them back to a better place have been less than successful. It is at times like these that we are reminded how blessed we are. Part of what gets them through their tougher days, are the events and experiences we have been blessed to be a part of each year. Wish Night in May was another incredible evening for us all, and now we are a week away from going to Camp Korey for what will no doubt be another amazing, life changing week!!

I know I have said before how difficult it is to put into words what this week in Carnation, Washington means to us. Try as I might, I am still at a loss. This year will be Chance’s third year as Counselor, Madison’s second as an LIT (Leadership In Training), and Abby’s first year as an LIT!! The opportunity to be leaders is there for all three, more than ever before, and I can hardly wait to hear all about their week as life changers for others too. Such an amazing gift to be able to give back in this way!! I cannot begin to express our gratitude for the opportunity to be a part of the Camp Korey family.

More, I cannot begin to express my gratitude to you all…the people who make it possible for us to be there!!  If not for you and your help, this would not be possible. In a life where finding opportunities like this for our children are rare, having this opportunity each summer to look forward to makes all the difference in the world.

Getting the go-ahead to go to Camp this year has been as challenging as ever, and thus our late start fundraising. If you feel led, any contribution you can make is insanely appreciated.

Donations can be made at https://www.youcaring.com/mcnaircampfund or at the link in the right sidebar.

We are so very blessed to have each and every one of you in our lives. Thank you for being our village, and for loving us as we are. You all provide the greatest of gifts to us in this way everyday, and we love you for it.

BIG hugs,

The McNair’s

Michael, Heather, Chance, Madison & Abigail

Why It Is Important: McNair Kids Camp Fund 2013

Wednesday was hard....physically & emotionally.

It reminded me why getting the kids to Camp Korey is so vital. Why having something to look forward to, and creating memories to hang onto, is so important.

 

Disney Channel & Iphone make it bearable

Madison and I started the day before the sun came up. We were on the road by 5am, and at our hospital by 6. By 7 she was in pre-op, where finding a vein willing to cooperate took two sticks, digging, and two different people to make it happen.

Madison made sure to get the name of the medic-turned-IV-placer so she could plug her into her phone, for next time.

Yes, my 16 year old daughter has a list of blood takers and IV placers for every hospital and lab we need to go to. Knowing when we find one that can make it happen, as painlessly as possible, we ask for them again.

There will always be the need.

By 7:45, she was doped up on Versed and rolling down the hall, away from me. I watched and marveled how "old hat" this is for her. How she casually (albeit a little drunkenly) chats with the nurses wheeling her away, and how, without trepidation she tells me she will see me in a bit. Then I sighed, because ever so often it hits me....this isn't "normal"...and she is amazing, brave, and incredibly forgiving to us all for what she must endure at our hands.

As I walked to the all too familiar waiting room, and went through the routine of telling (the same nice lady I see almost every time) my child's name, I found myself looking for some spark of recognition from her. She seems to be one of the few that doesn't recognize me on sight. But then, she hasn't met my children...

They are always in an operating room when I am there.

They are the spark people need to recall that last encounter...they are the reasons to remember. I smile to myself thinking of the impact they have, and how they always have something to say or do that makes people smile.

I follow my usual routine of running to Starbucks down the hall, grabbing (more) coffee and something to eat, and willing it to take at least a few minutes so I am not left with my thoughts, and the less than comfortable chairs, for too long. I wander out in the hall, hoping to see someone I know (which happens far too frequently, considering I am standing in a hospital)...someone who can fill a few more of the minutes I have to wait. I wander for a few minutes, then hurry back to the waiting room, worried I might take too long and miss the doctor. This time, I see the surgeon as he hurries down the hall to join in on the procedure, already in progress in the OR. I know his part won't take long, so I make my way back and sit down.

Sometimes, the plans we make going in are not always how  it pans out.

The plan was to:

1. Put her under to scope her esophagus and stomach to see how our control of reflux was going, and to make sure we didn't see any signs of issues from the iron she takes, or yeast, due to all the antibiotics she is on.

2. To remove the long feeding tube that was placed after her surgery in April, that we had been unable to remove here at home. We tried twice, with the second attempt leading to another abscess.

3. To have our surgeon fully examine the g-tube tract for signs of another fistula, or an explanation for the latest abscess.

And 4. To replace the long g-tube with what she has always had, called a "button" g-tube.

Madi was desperate to get that long tube out and her old one back in. Desperate!! The long one hangs down a ways, doesn't clamp (leading to messes when trying to hook up to her feeding pump), is more obvious, and in general, just isn't what she wants. In this life, she has to put up with enough, so we do all we can to make it as unobtrusive as possible.

How things actually went:

1. We didn't have the anesthesiologist we were told we would have. Not a huge deal, but I have gotten used to not having to explain everything and convince them we should do what we know works. I hadn't prepped for the discussion, and with that, I did not advocate for Madison as well as I should have.

2. While the scope went as planned, there was a new finding. A nodule was found that hasn't been seen before, but we are pretty sure it's something that happens sometimes when you have been on PPI's (reflux meds) for too long. Lord knows she has, and we talked again about the need to do surgery to hopefully stop the reflux and allow us to get off the medication. Biopsies were done, so we will know more next week.

3. The surgeons inspection of the g-tube tract was revealing. While not another fistula, there is a fissure (tear) running from the stomach to about halfway up the tract. Barring us allowing the g-tube tract to close, something we cannot do, the healing process is going to take time. How much is anyone's guess.

4. This fissure means we could not switch her back to her old g-tube type, and another long tube was placed. The button type would have put enough pressure on the stomach side of the tube, it would cause more tearing and there is a real risk of the balloon that holds it in place moving into the tract and causing more damage.

I knew immediately that Madison was going to be upset with this change in plans. It was, after all, the ONLY part that she cared about.  My feeling that she would wake up from anesthesia and immediately pat her stomach to feel the new tube, and be confused when it wasn't there, apparently is exactly as it went.

I had to chuckle at our doctors a little...our GI and surgeon are friends, and according to our GI, they apparently had a bit of a fight over Miss Madison. GI was all ready to place the button g-tube when the surgeon came in and promptly told him no way. GI insisted he was going to do what his patient wanted....surgeon said no....GI insisted...surgeon threatened to walk out...and they were at an impasse. Once the surgeon found the fissure, even GI couldn't disagree that the button would cause more problems, but he wanted me to make sure Madi knew he fought for her, and was bullied by our surgeon....LOL!

As expected, Madi was a mess when I got back to recovery and could explain what happened. I haven't seen her that sad in a long time. And my heart broke. And there was not a thing I could do to make it better.

And then....we talked about camp. Little by little, as we were discharged and made our way home, she smiled a little more, and distracted herself with camp plans. The Dr. Pepper with "good ice" from Sonic helped too.

What happened, in the grand scheme of things, was not a big deal. She has done the long tube for 3 months, and put up with it like a champ, and she can do it again. This was one of those quality of life moments....she needed the things to go back to the way they were... she needed this "win".  She was disappointed, and sad, and faced with a set back she didn't need.

She also proceeded to do what Madi does so amazingly well....she quickly started getting "over it".

My day wasn't done, oh no!!

A drive home, a switch out of children, and I was on my way back with Chance. Wednesday was the day we met with our pain doctor to try and get him some relief and a plan. For reasons we still don't understand, Chance has been in a decline since January, that has included a significant decrease in physical stamina, constant muscle pain, a week long episode in April of severe muscle pain, and, as time has gone on and his body has been stressed, Neuro issues, GI problems, and an increase in fatigue.

After consulting with everyone I can think of, making changes in physical therapy routines, and testing what we could think to test, he & I were finally faced with the need to start treating the symptoms and hoping for some relief.

The appointment went well, and we have a plan that we hope might work. It won't fix whatever the problem is exactly, but at this point, pain relief is a huge need.

Distraction is too. Camp Korey is an awesome distraction, coming exactly when he needs it. Coming exactly when I need it too.

Thursday, my inadequate advocating for Madison came back to bite us on the butt, when she woke with every muscle in her body (even her tongue) in severe pain!! It was a long day, with lots of phone calls and worry, but we finally were able to determine that she was given something she hadn't had before, and that is likely causing this problem. Once we figured that out, pain meds were given, and by evening she was in much better shape.

Days like these, they are hard, but they remind us to hang on even tighter to those things that mean so much to us. We are so very grateful for each and everyone one of them.

We are steadily making our way to this goal....with your help!! We thank you, from the bottom of our hearts, for your support.

I have extended the deadline on the fundraiser to Sunday, and the raffle drawing will take place Monday morning. If you feel led, we are still in desperate need of your help at www.youcaring.com/mccampfund

We fly out tomorrow evening, deliver Chance & Madi to Camp Korey on Sunday, and Abby on Monday for the start of another amazing, life changing week. All thanks to you.

Thank you.

A Raffle: McNair Kid's Camp Fund 2013

We are so grateful for the support we are receiving. Thanks to you all, we are making progress towards our goal of getting back to Camp Korey with the kids.

I am reminded how hard it is to ask for help.....and how incredible our community is when we have to do it.

With that in mind, we want to offer something creative to those that are able to help. 

For every donation of $25 or more made by July 27th, your name will be entered into a raffle for an original piece of art made by Abby, Madison, and/or I. We will work with you to create something just for you!! (Those that have already donated will be entered also)

We will draw two names and announce the winners by Monday, July 29th....the first day of camp!!

Some examples of the work we have done:

All acrylic on canvas

Acrylic on Canvas (paintings)

I Love Big D photo collage (20x20)

McNair Kid's Camp Fund 2013

Dear Friends, Family, & Supporters,

We come to you today to humbly ask for help to make it possible to get the kids to Camp Korey again this year.

Donations can be made at www.youcaring.com/mccampfund or by clicking on the link on the top right of this page.

There are moments in time, and acts of kindness, that touch you at the depths of your soul. They happen rarely, and when they do, they move you, and take your breath away. Thanks to all of you, our family has experienced moments like this several times over, on a grander scale than we could have imagined.

“I’ve seen and met angels wearing the disguise of ordinary people living ordinary lives.”

Tracy Chapman

These moment’s for us started with a plea for help to get the kids to camp each summer; and it has been met with many angels. With each act of kindness, our hearts swelled a little more, and we were (yet again) blown away by the support—from the “village” we have been blessed with for our family. I was again reminded how much one person can make a difference in another person’s life and how a group of individuals can provide a family with a life changing experience.

They may say Disney World is the “happiest place on Earth”, but for one week in the summer, I have no doubt that Camp Korey really is. The smiles on every child, counselor, nurse, and doctor tell me I am right. Each year we wonder how we can possibly top the year before, and somehow it happens. This place…Camp Korey…and the people there, change lives.

With your help, this year we return, perhaps more triumphantly than ever before….This year we reach the goal we set last year to be returning to this special place as a whole family, with Michael; Chance, a year older and a year wiser, returns a seasoned counselor, with hopes and goals for every one of “his kids”; Madison is returning, in the role of LIT (Leadership In Training) for the first time!!; and Abigail will be savoring her final year as a camper.

This year, while impossible to imagine it being possible, we are even more grateful for this blessing in our lives.

Camp Korey’s mission is to “honor the courage, strength, & determination of children and their families who battle life threatening and serious illnesses; and to provide them with a safe, friendly, medically sound environment in which to simply have fun and be kids.”  Camp Korey fulfills this mission in amazing ways!!

For those that may be new to our story, my name is Heather and I have been married to my husband, Michael for almost 25 years (our anniversary will happen while we are in Seattle). We are the proud parents to three amazing young people….Chance (19), Madison (16) & Abigail(15).  I write to you today to share our story and to ask for your help to make summer camp possible for our children again this year.

Camp Korey 2009

Chance, Madison and Abigail have endured a great many challenges since they were very young, due to an inherited metabolic disease called Mitochondrial Disease.  Mitochondria are present in every cell in the body except for red blood cells, and are responsible for the production of energy for the cells to use to function.  When a Mitochondrial Disease is present, not enough energy can be produced and many body systems are affected and progressively fail to provide their function within the body.  Any stress on the body, even something as simple as a cold, can cause devastating affects. It is a life threatening disease with no cure, and minimal treatment options.

Camp Korey 2010

Camp was initially important to make happen because it was a “typical” right of passage for childhood, and one we thought  would never be possible for the kids. Due to all three being unable to control their body temperature correctly, most summer camp locations are too hot for them to be able to participate, and their medical needs make most camps, even those for medical reasons, unable to handle their complex needs.

Thankfully Camp Korey, just outside of Seattle, Washington, exists and they are the first & only camp in the country to have dedicated a week to Mitochondrial Disease kids!! Camp Korey is a medically supervised camp staffed with physicians and nurses, and trained camp counselors for children suffering from serious and life threatening illnesses.  The camp provides a week-long experience of camp programs and activities for children ages 7-15 at no cost to them.

Camp Korey 2011

What camp has become for the kids is so much more than giving them a “typical” experience.  It has changed their lives!!  They come away from camp more confident & independent, but more importantly, they come away in better shape physically, mentally & emotionally, with a renewed spirit of hope and optimism.  It is truly incredible to see them shine, literally, after a week at Camp Korey.

Camp Korey 2012

To quote Camp Korey’s website: “For a few days or more at Camp Korey, children enjoy the novel experience of being defined not by their medical diagnosis, but by their spirit, their creativity, and their own potential.” Thank’s to Camp Korey, our children have the chance to be defined by such wonderful things.  Thanks to our supporters, like you, they have this chance to be so defined!! Its because of you and ALL that you do, that these kids can flourish and be amazing, at Camp Korey, and in their world in general.

While the camp is free to attend, we do have to get ourselves there, cover expenses getting the kids ready to go, and expenses while we are there, and this is where you all come in.  

We need your help to make it happen!!

Fifteen years of very high medical expenses has devastated us financially, so something like this is just out of our reach without help.  This last year has been especially difficult for our family, and all three need something to look forward to, and are so excited about the prospect. All to say, we just have to find a way to make this happen.

We are working hard as a family to raise the money needed, and are incredibly grateful for any contributions you might be able to make.  We have full faith that this is meant to be and are looking forward to making some incredible memories.

Thank you for your thoughtful consideration of our cause.

Sincerely,
Michael & Heather McNair

Proud Parents to Chance, Madison & Abigail

Previous posts about Camp:
McNair Kids Camp Fund 2011
Incredibly Blessed
Happiness is

Camp Korey creates some awesome videos to share their mission. The following three tell a little more about the Camp, and include the kids and I talking about what Camp Korey means to us.

A Day in the Life at Camp Korey (me, Madi & friends)

Leaders In Training (Chance & friends)

How has Camp Korey Helped You Grow? (Madi & friends)

WC Day 6: Walk for Wishes

9 years ago, my then 11 year old son spent a great deal of time thinking of ways that we could support Make A Wish. Each time we would go to visit the office, he would head straight for Berta’s office and begin sharing his ideas on ways to raise money for this organization that our family loves so much. Some were wild…..just ask Berta…..but others were pretty awesome and had some promise.  Berta was a SAINT for sitting and listening to my boy ramble on, and Michael and I love her for always giving the kids this time to share their ideas and thoughts.

On a particular occasion in 2005, my boy shared that he thought Make A Wish needed to have a walk of their own, not knowing it was something they had already started planning for the following year!! Erin, another precious part of our Make A Wish family, asked Chance to help plan it, and ultimately they chose my boy to be their first Wish Child Ambassador for the event!! I could not have been more proud watching my son speak publicly for the first time in front of hundreds of people the day of the walk. I am not sure there are many things he is more proud of either. It was an awesome day, and we continue to look forward to the walk each year.

We had a lovely morning supporting Make A Wish!!

 Seeing friends....

Walking with friends....

And celebrating our Wish Kids!!!

Wish Kids 2013

We were reminded, yet again, how blessed we are to have these people as family.

Stay Calm and Ride On...Abby's Army needs YOU!!

On Saturday, October 6th, Abby will be riding in the WISH100 again!! 

She is riding the 10 mile course, but unlike past years, her dad isn't going to be able to do this with her as he is still not released to ride since the accident. With this in mind, it would mean the WORLD to McNair and I if you would consider riding with her. 

Would be so awesome to see a whole team wearing pink camo bandana's as part of Abby's Army, supporting her as we all give back to an organization that means so very much to us

Cannot make the ride, please consider donating to the cause in her name!! Please share this with everyone for us!! Thank you....we love you!!

Incredibly Blessed

The Kids Day One Mito Week Camp Korey

Thanks to all of you, my precious children are at Camp Korey at this very moment, no doubt having the time of their lives!!!! 

We took Chance out on Sunday so he could attend orientation, and by Monday when we were there to drop the girls off, he was in full counselor mode!!  Meanwhile, the girls were about to burst with excitement!!!!

There are no words to express our gratitude for allowing our kids to have this experience….thank you just isn’t enough!!

I hope a few pictures will tide everyone over till the end of the week when I can share all about the kids experience this year!!!

Enjoy!!

Chance arrives at Camp Korey

The Girls and I picking berries on the overlook above Camp Korey (the red roofed bldgs in the distance)

McNair Kids Camp Fund

THE COUNT DOWN TO CAMP HAS BEGUN....... 7 DAYS AND COUNTING!!!!

Two summers ago, Michael and I asked for help to make an impossible dream come true for our children…..and it was one of the hardest things we have ever done….asking for help is not something either of us is good at.  Asking for help at this level, and going on faith that we would somehow raise the money needed, was a HUGE leap….and so very difficult to do.

Two summers ago though, we learned that there was a summer camp that our children could attend.

It’s a right of passage…heading off to summer camp, at least once in your childhood.  Where you are independent, perhaps for the first time really, and experiencing the joys that are summer camp.  There is nothing quite like it.  And it was not something we thought we would ever see our children be able to do.  I had not realized how much it hurt my heart to think that, until the opportunity to make it happen presented itself.

The reality is, as amazing as our children are, as capable as they seem to be, and as healthy as they look to the average person….there is a tremendous amount of care, behind the scenes, that takes place for them to function so well.

Each day….

57 medications are doled out for a total of 95 doses given

Fluids are given via g-tube (permanent feeding tube) to all three, three times a day

Oxygen levels are spot checked 4-6 times a day and overnight 3-4 nights a week

The following equipment is needed:

            3 Oxygen reservoirs

            3 portable oxygen tanks

            3 pulse ox machines

            1 Bipap machine

            3 syringes and feeding tube supplies

            24 medication syringes to fill and administer liquid meds

And this is a TYPICAL day here….it’s even more intense when someone is sick or needing more support.  The work can almost double during those times….and I cannot even think about having more than one sick at a time.  It happens, but I deny those times in my mind…LOL.

While care and equipment was not as much two summers ago as it is now, it was still more than a typical summer camp could accommodate.  More though, a typical camp would not have been able to monitor and ensure the kids well being.  While there are medical camps here in Texas, the reality that the kids are not able to regulate their body temperature correctly, and thus cannot tolerate the temps we see here in Texas during the summer, even the medical camps were a no-go.  Finally, no camp in the country had offered a week for kids with Mitochondrial Disease before this time, because the truth is, they require so much more support than the average child with a medical condition usually served by a medical camp.

Two summers ago, Camp Korey in Carnation, Washington offered the first ever Mito Week…..and in a moment, the dream had the potential to be real.  In a moment, we had to swallow our pride and ASK FOR HELP.

In the weeks that followed, we were overwhelmed and deeply touched by the love and support provided by our friends, family, and strangers too.  In the weeks that followed, those friends and family gave from their heart and made this dream come true for our kids and us.

Even as it happened, and Michael and I struggled to find a way to deal with the mixed feelings we had about needing to ask for the help, we felt the love and support so intensely.  It took a chat with my precious great uncle one day, as I called to thank him and my great aunt for their contribution, for me to finally see the truth of our situation. When I told him how thankful we were, he stopped me and shared how thankful THEY were that we had given them a way to help and support our little family.

It’s still not something Michael and I are “comfortable” having to do, but for this one thing, we just have to find the humility to make it happen.

What we could not have fathomed was just how much Camp Korey would impact our children’s lives and ours.

First Day Camp Korey 2009

Two summers ago the blessings were cooler weather and a chance for them to rebuild the energy the heat here in Texas was sapping…..the chance to meet other teenagers with Mito and build friendships with others that “got it”

Madison, her roommate Casey, & counselors CK 2009

…..and the chance to be leaders within a group of their (true) peers.  Emotionally & developmentally the effects of that first year of camp was even more profound.  They left Camp Korey that Friday afternoon different children than they had been walking in.  They had found their independence, developed deep, real relationships, and found another “home”.  By all accounts, the Mito week farewell was the most emotional Camp Korey had all summer, and maybe ever.  There was not a dry eye in the house….every child, every counselor, and every nurse was in happy tears as they said their goodbye’s.  Not a single one wanted the amazing week to end.

Chance & counselors CK 2009

Last summer, Chance was asked to come back as an LIT (counselor in training) because he had aged out of being able to be a camper, and the girls returned as campers.  Again, our friends, family, and strangers came through to help us make this dream come true.  Last summer, while I could share how profound the experience had been for the kids the first year, the reality is, words don't REALLY convey it I am afraid.  Last summer we thought we knew what the blessings would be…..and yet again, we were surprised.

Chance LIT CK 2010

Last summer our son found his “calling”.  At the ripe old age of 17 he spent a week being selfless and truly giving of his spirit in a way he’d never done before.  A week later he came home a different child…..he came home a young man with the realization that his destiny includes helping special needs kids.  I knew the week had been profound when for the first WEEKS after camp he didn’t share much of anything HE did, but shared every moment he had with “his” kids, every accomplishment THEY made, and I watched as his heart was touched and changed in a moment.

Chance & one of his campers CK 2010

Last summer, my girls came home that much more mature, more confident, and with incredible relationships with some amazing young people they have been able to maintain from afar in the year since.  

Abby & her BFF CK 2010

We saw Abby go from struggling some the first year, to a young lady walking away strong and changed, inside.  

Our Super Hero, Madison CK 2010

We again saw Madison nurture every other child there in such a sweet way, and have a chance to be “typical” for a change…only at Camp Korey during Mito week can that happen!!  We even saw their relationship with each other strengthen and mature in that week. 

The Girls CK 2010

The memories created during this single week at Camp are the very thing that they cling to during the rest of the year.  Not a single week goes by that something camp related isn’t talked about or shared.   Mito Week at Camp Korey is so much more than “just” a week at summer camp for our kids, for so many different reasons.

A few of the people that make this week happen CK 2010

In some ways I feel silly when I try and convey how profound these last two summers at Camp have been for our children.  It’s summer camp for goodness sake!!!  How profound can summer camp really be!!??  The truth is, I cannot possibly convey it with words….they simply do not exist.  It has changed our lives.  YOU ALL have changed our lives, because without your support it’s not something we can make happen on our own.

View from Camp Korey 2010

This summer, Chance again returns as an LIT….a more mature LIT, one that “knows the ropes” this year, and I think his impact on the kids there will be even more profound than it was last year.  More, I think their impact on him will be even greater.

I find it interesting that we sometimes think we really are grasping how important something is to us or our loved ones, only to realize when it is in jeopardy, how far you were from REALLY getting it’s worth. 

View from Camp Korey 2009

A few weeks ago, after submitting the girls applications, we were contacted by the medical director at Camp Korey.  She was writing to let us know that as of that moment, they were not able to accommodate the girls needs at camp this year.  I was devastated…..all that love us and knew what was going on were devastated.  The thought that the very thing that makes them eligible for this camp (fighting an illness) might be the very thing that would keep them out, was more than I could even grasp.  The truth is, this is why no other medical camps offer a mito week (at least in my opinion)….the care level needed is just so much higher than is typicall.  In this case, they simply did not feel that they had enough nurses or doctors lined up for the week to make it possible for the girls to be there.

My heart sat in my throat for almost 2 weeks.  I couldn’t bear to tell the girls until we knew for sure what was going to happen, and the amazing people at Camp Korey went into overdrive doing ONE thing…..working, networking, and begging for more medical staff to come on board for this one week.

A 900 pound weight was lifted from my shoulders, and my heart finally went back where it belongs when I got the call that they had been able to find the staff needed…..that my girls WILL be able to attend camp this summer!!  The amazing staff at Camp Korey went above and beyond to make this happen, and somehow I hope I can someday convey to them how much I appreciate it.  Again, words just don’t do it justice.

SO, this summer, my girls head back to camp a little more mature, with incredible excitement and joy knowing they are going to be seeing their friends again and meeting new ones, and with HOPE and JOY already in their hearts just thinking about it.

The last year has brought more changes to their lives and care needed, and with this, we continue to strive to focus on QUALITY of life, and this week at Camp is all that we could ask for in that respect.  Quality of life IS being at Camp Korey during Mito Week…..I only wish I could see it all unfold and have you all there with me watching!! 

It IS going to be another incredible week!!!

With the uncertainty of the last few weeks on whether the girls would be able to attend camp, our fundraising efforts have been hampered.  We didn’t want to ask for help for something that might not be happening, and we didn’t want to tell the girls what was going on until we knew for sure what their status was.  With that, we needed to delay the request for help, at least on a broader scale.  Even with the delay, some funds have already come in, and we are making progress towards our goal!!

If, and only if, you feel led to help, we would appreciate it more than we can possible convey.  While Camp Korey is free for the kids, finances are needed for getting us there and home, lodging, transportation and food for the week.

HOW YOU CAN HELP:

1. In the side bar to the right, at the top of the page, there is a “Donate” button.  By simply clicking on this you can make a contribution online, safely and securely, to the cause. I will update our progress towards our goal daily!!
2. In the coming days, paintings done by Abby and I, as well as some of Madison’s photography will be featured here on the blog and will be up for auction.  Each original piece will go to the highest bidder, so if bidding is your thing and you see something you like, this is another way to contribute.
3. Feel free to share a link to this blog with anyone you think might be interested in helping us make this happen for the kids. There are links in the right side bar that allow for easy sharing on Facebook and Twitter.
4. Finally, if making an online donation is not something you feel comfortable with, please feel free to contact me at kass@swbell.net, and I will get you an address to send it to.

Every dollar makes a difference, no amount is too small.  It’s amazing how quickly small contributions add up!!!

Thank you all.  Thank you for allowing me to share the amazing experience Camp Korey has been for our family. Thank you for the support and love you have given us in previous years, and the time in between camp.  Thank you for considering helping this year.

Again, words just are not able to express how much it means to us.

BIG hugs,

The M’s