I wish to go deep sea fishing in Hawaii

Noah

10

rare muscle disease

Wish kid Noah

Noah's Wish to go Deep Sea Fishing in Hawaii

In February of 2013, our son Noah, who was 5 at the time, had a severe stomach virus.
Wish kid Noah

He became so dehydrated that we had to rush him to the emergency room.  After being treated for strep and stomach virus our ER doctor noticed Noah had a bright red rash across his eye lids, cheeks, knuckles and knees. I had noticed it before but he’s all boy. Always covered in weird rashes, bruises, and any combination of outside mess. He had seemed a little sluggish over the past few weeks but nothing too extraordinary. Little did we know that the detailed thinking and quick actions of this ER doctor would start us on a 5-year journey for Noah.  

Noah was diagnosed with a rare muscle disease that only 2 in a million kids are diagnosed with each year. The disease attacks the soft tissues in your body. In Noah, mainly his muscles, skin and blood vessels are affected. Noah received high dose steroids and methotrexate injections weekly for almost a year. For 5 years he endured approximately 100 infusions, 200 oral medications per month and severe muscle and body pain. He rarely complains or makes excuses, most would never know what this incredible child goes through daily. He would play outside for hours, come inside and be unable to stand on his own from the pain of muscle deterioration.  

We noticed last year that he started asking more questions as to “Why me?” “Why don’t my friends take as many breaks as I do?” “Why do we keep adding new medications?”.  

That’s when Make-A-Wish made a boy’s dreams come true. Fishing in Hawaii! Noah has always loved fishing. It’s something he can do that doesn’t hurt as much and that he also has a talent for. He had always heard of the amazing water and fish in Hawaii and he dreamed of being there.  

On the Big Island, we swam with the Dolphins, took an amazing deep-sea fishing trip, toured a volcano, a coffee farm, danced at a Luau and had the most amazing week of our lives. When we asked Noah what his favorite part of the trip was? “All of it!” 

After 5 years of fighting, we all got 6 days of focus on each other, on gratitude for this precious child, and the indescribable gift of time without worry. God’s timing was perfect. The month after we returned home Noah started a new treatment. One we pray will get him in remission. I know that this trip with Make-A-Wish was just the fuel he needed to fill his cup of joy. Make-A-Wish, our precious volunteers and wish granters, will always have our love and gratitude. Thank you. Thank you. Thank you.   – WISH MOM, KELLY