Many Fabry families, including mine, benefit from Make-A-Wish
How my twin sons followed up their diagnoses with life-altering gifts
My twin sons, Anthony and Michael, were diagnosed with Fabry disease at age 17. Anthony’s condition was identified by a dermatologist here in Texas who saw the cluster of angiokeratomas, or bumps, in his belly button and how they were spread across his torso and the rest of his body. Michael also had the cluster in his navel and had dealt with neuropathy, gastrointestinal pain, and heat intolerance, just like his twin.
We were so blessed to be seen immediately by Dr. Schiffmann, who’s knowledgeable and experienced in treating people with Fabry. He was surprised, however, when Michael asked if he could qualify for Make-A-Wish. Apparently, Dr. Schiffmann hadn’t been asked that before. Leave it to my eternal optimist to find a cheerful perk related to his heavy diagnosis.
The Make-A-Wish Foundation is an extraordinary organization that brings joy to suffering children by making their wishes come true. I’d originally thought it only granted wishes for terminally ill children, but I’ve since learned these once-in-a-lifetime opportunities go to thousands of kids with diagnoses that require lifelong medical attention.
Both boys quickly qualified with Make-A-Wish, which was a blessing that boosted the morale of our whole family.
2 teens, 2 wishes
Being appreciative and pragmatic, Anthony wished for money for college. That was a good choice during a time when COVID-19 had slowed down many types of wish-granting, and especially so since he was about to attend Benedictine College in Kansas.
The North Texas Make-A-Wish volunteers were amazing. When Anthony’s wish was granted (and a check was mailed to his college), a lovely wish-granter came to our home with dinner and sweet treats for the whole family!
Throughout the process, Anthony received so much more than the college money. He got cards and gifts from Make-A-Wish, a chance to have Chick-fil-A deliver a meal to the family, and other gift cards and bonus goodies. Most important, he was able to delight in all these gifts because of his disease, not in spite of it.
Michael, unlike his more practical twin brother, is a dreamer. He’d long had a thing for old pickup trucks, and he’d begun to envision having a classic. So he bought a 1979 Chevrolet C20, and his wish was to have the interior restored.
He got the old truck inexpensively because the interior was pathetic and the engine needed work. He spent countless hours with his brothers and friends working on the truck, with more trips to the mechanic shop than I care to recount.
After innumerable repairs and several months of renovation, Michael’s restored ’79 Chevy was unveiled. His brothers weren’t able to make it to the ribbon-cutting, but he invited his cousin and a few friends to join us for the ceremony. All present relished Michael’s excitement as he cruised out of the restoration shop revving his engine.
Make-A-Wish grants wishes to kids 18 or younger, but Michael was 20 when his wish was completed. During the three years he waited, he enjoyed T-shirts, swag, and other small gifts from the foundation. He also loved having his precious truck as a conversation piece and spent an invaluable amount of time bonding with his brothers and friends as they worked on it.
The day of his wish-granting didn’t come quickly, but it was worth the wait.
My daughter, Marisa, who was then 12, climbed into the back seat of the Chevy and rode off from the ribbon-cutting with Michael. She too had dreams of getting a wish granted, considering she’d recently started enzyme replacement therapy for her Fabry. For now, however, Make-A-Wish has denied her application.
Receiving that rejection letter was sorrowful for my little girl, who’d witnessed her brothers’ wishes and often dreamed of what her own would be. We’ve found consolation, however, in knowing that she’s ineligible because her Fabry journey is different from her brothers’; in fact, we hope her Fabry symptoms will be mitigated because she’s female, with X chromosomes without the disease-causing mutation.
I’d be remiss if I finished this column without a big, heartfelt “thank you” to any and all who’ve participated in making life-changing wishes come true through the Make-A-Wish Foundation. The children with chronic illnesses thank them, too.
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