Dear Friends and Family,
What could possibly force me to break my solemn vow of never putting myself through the torture of participating in another Triathlon? Only a cause as worthy as the Make -A-Wish Foundation!
This foundation has walked along side some really close friends of mine and everyone one of the families has nothing but great things to say about the foundation and the work that they do.
The following is just one of the many wonderful stories highlighting the work that the Make-A-Wish foundation does.
This is Isaac Jurmu, he is a 10 -year old boy with a love for sports. His favorite sport is baseball. He is your average boy with a loving family, he has a sister, Hailie, who is 12, and 2 younger brothers, Avery whois 9 years old and Eli who is 7 years old.
To look at Isaac you would never know he is sick and that he takes multiple medications every day or that he battles multiple health conditions. In October of 2012, Isaac became very sick and we spent 8 days at the Helen Devos Childrens Hospital. At that time the team of doctors were not sure what was wrong, all we knew was our little boy went from being active and only battling a few things to so sick he couldn’t even stay awake or walk on his own. Those 8 days were a whirlwind of emotions and concern for all of us.
Isaac endured numerous tests, from blood draws, to spinal taps, to scans. What we learned in those 8 days was Isaac had multiple things wrong and and it wasn’t untill months later that we had a better idea of what we were dealing with. In January of 2013 we learned Isaac has the following diagnosis: mitochondrial cytopathy & dysautonomia. Isaac was also battling with: high blood pressure, kidney disease, renal tubular acidosis, neprhocalcinosis, migraines, GERD, tremors, Generalized Immune Deficiency, JRA, severe asthma and allergies.
The diagnosis of dysautonomia and mito came as a surprise to us, we didn’t know what this meant for him or what kind of life he would live. Isaac’s diagnosis of mitochondrial cytopathy meant his powerhouse cells were not working like they should which explained why he became so tired and weak so fast. There are so many variations of mito that we have not been able to pinpoint which specific one he has. Dysautonomia is a disorder of the autonomic nervous system, it means Isaac will have difficulty maintaining a normal blood pressure, heart-rate, body temperature, and so much more.
It was a relief to have a diagnosis, but then came the question of what does this mean for Isaac. What is his prognosis? We were told by multiple physicians there wasn’t a prognosis and we should take each day one day at a time. It wasn’t until Isaac would get sick did we realized what they meant.
We quickly learned whenever Isaac would get a cold or a simple virus he would end up in the hospital. Isaac could go from being perfectly fine to waking up in the middle of the night very sick, requiring EMS & First responders to come to his rescue. He has had more hospital visits, ICU stays, and ambulance rides then I can count.
His new diagnosis meant controlling his blood pressures and heart rate would prove to be more difficult. We have learned that when Isaac falls ill and he shows signs of fever or dehydration we most likely need to go to the ER for treatment. Sometimes we call these the “tune up”. Every year when school goes back and we enter the cold and flu season we walk on pins and needles not knowing if the next virus or illness Isaac contracts will take our son from us.
Learning your child has a life-threatening condition is heartbreaking, you become over cautious and you suddenly become this person that sees germs everywhere. You no longer view simple childhood illnesses as “simple”. Sleepovers with friends are not just sleepovers they turn into a teaching lesson for the other parent of everything to avoid, what to do if he becomes ill and what medications to give.
Isaac also has periods where his body will attack its self, his body thinks there is a virus and there isn’t. When Isaac is sick we see setbacks and he will be become weak and tired out easily.
As parent’s you learn to take the good and run with it and you deal with the bad as it comes along. Planning ahead for things is no longer an option because you have to always think “What if this happens?”. You have to be prepared for everything. Traveling can be a challenge because you have to make sure you have every medication, his medical history and the closest hospital to your location mapped out in the event you need a trip to the ER. One child’s chronic illness has an affect on the whole family, not many people realize how the other family members are affected. Trust me, it takes it toll! But we make it through each day undefeated and Isaac continues to fight no matter what is thrown his way.
We were introduced to Make-A-Wish by our pulmonologist. We than applied for Isaac and due to his diagnosis of mito and dysautonomia, he was granted a wish. Isaac’s wish was to go to NYC and see the NY Mets VS. NY Yankees subways series game and site see the big apple. July 31, 2016 his wish came true and we embarked on our journey as a family of 6 to NYC! We had rough start due to plane cancellation and some delays but we made it that night. Isaac was elated, his eyes full of sparkle and happiness. Our family was able to enjoy time with Isaac that didn’t include trips to the doctor or hospital stays.
Day 1 of our trip consisted of Central park zoo and exploring Central Park and lots of pictures were taken and memories made.
Day 2 was even more fun as we got to site see Manhattan and later that day little did we know Isaac was about get the surprise of his life! We were invited to the NY Mets stadium pre game and were able to go watch the team do some warm up before the big game. Later he met Yoenis Cespedes and Curtis Granderson. The fun didn’t stop there, he was invited to the club house and got to meet the whole Mets team and tour the building as well as hang out with Grandersen. The best day ever for our son, he got to bat with Curtis Grandersen.
We want on to enjoy the evening and watch the Mets win the game sending the Yankees home to the Bronx!
Day 3- full of more fun – We toured the Empire State building and the Intrepid museum.
Day 4- A whole day at The Bronx Zoo! It was amazing!
And lastly, Day 5 was spent touring Liberty island and and seeing Lady liberty along with 9/11 memorial. Isaac has a love for History so he was thrilled to learn more about the 9/11 memorial and lady liberty.
Isaac got to experience a real NYC pizza, cab rides, a ferry ride, and a plane ride. Make-A-Wish was amazing! This trip changed Isaac, it made all the upcoming appointments more tolerable. He loves to talk about his trip and how he wants to go back. To be able to have an organization give our son this trip meant so much. It’s not something we could ever do, and to see him smile and have that glow in his eye, that was so rare to see, meant to so much to us. We can’t thank the organization enough. As you all embark on your journey to raise money for kids, remember that money you raise goes to an adorable child who is fighting their own battle and a wish granted means a day of fun allowing a family enjoy a normal day with no worries and no hospitals! Every dollar counts-
Please help by contributing any amount you can - $50, $75, $100 or even more. Every dollar you donate can help Make-A-Wish kids renew their courage and find a turning point in their lives.
Thank you for your support!
Mr. Scott Fish
Dawn and Devin Norman
Tim & Gina Northup
The Appleton Family
Greg and Susan Hahn
Sally & Jeffrey Tucker
Mrs. Kristi Samdal