She and her three-year-old daughter, Carmel, just returned home from a marathon week on the east coast. They spent the better part of five days in extensive testing, procedures, and talking to doctors about Carmel’s complex medical conditions. “She’s literally one in a million … and she’s one of only 1,100 people worldwide diagnosed with her condition.”
Carmel is living with epilepsy and cerebral palsy, and gastroparesis, but that’s not the condition Sophie is talking about. Carmel has an extremely rare condition called alternating hemiplegia of childhood (AHC). In the simplest of terms, AHC is a progressive, life-threatening, extremely rare neurological condition that causes episodes ranging from mild weakness to complete paralysis. And the side effects are just as devastating from developmental, speech and motor delays, to major regression at times. “There is no cure, there is no known treatment protocol and there is no understanding of her life expectancy.”
Every day is a challenge and the road ahead is hard for Carmel and her family. There are constant therapies and appointments with breaks few and far between for anyone.
For families who have children with extreme special needs, a vacation is often farfetched due to the expenses. “As a parent of a child with special needs, you know it’s not fair what your child is walking through and you want to give them opportunities to just be ‘normal’ and have fun, yet it is nearly impossible to accomplish that. For me, I just can’t take my family on a trip to get away and rest. But now because of Make-A-Wish, I can.”
Soon Carmel, her two sisters and her mom will pack their bags and head to Oregon for Carmel’s wish from Make-A-Wish Alaska and Washington, the nonprofit that grants wishes to children with critical illnesses. Carmel says her wish is to “ride horseys in the mountains” at a dude ranch.
For a little girl who often struggles with speech, articulating her wish was easy for her. “Her vocabulary is limited, and so when she was able to come out and say what her wish was, it was truly incredible,” says Sophie. That’s what hope does for the body.
It’s a wish that Sophie wouldn’t have thought of for her daughter, but in hindsight it makes perfect sense. Nothing in the world brings Carmel more happiness than horses. Watching them, riding them, and being near them brings out Carmel’s truest and most authentic self.
In anticipation of Carmel’s wish to ride horses in the mountains, Sophie says, “I don’t know if I’ll stop crying the whole time. For her to be on a horse, in the mountains, she’s going to feel free when most of the time she’s trapped in her body.”
For five days, the family will enjoy much-needed time away from the hospital and just be a family at the Brasada Ranch in Oregon.
“If history is any teacher, we believe this wish will do for Carmel and her family what we have seen it do for thousands of others,” says Barry McConnell, president and CEO of Make-A-Wish Alaska and Washington. “It’ll allow them a chance to make memories and have some restorative time together for hope and healing.”
There is growing evidence that wishes play a role in the child’s overall health and wellbeing. In fact, research shows that wishes have proven physical and emotional benefits that can give children with critical illnesses a higher chance of survival.
Sophie agrees that the anticipation of the wish has already been a helpful tool getting Carmel through some tough times. “Before she has to go through a tough medical procedure or doctor’s appointment, it reminds her that there is so much to live for. It’s more than a distraction. It’s that installation of hope. I know that it’s healing and hope-giving to my oldest daughter, too. It gets us out of that depressive state,” she says.
Sophie has high hopes that Carmel’s wish will help them heal and gear up for all the years ahead.
“People often say to me ‘you are such an amazing mom’ and I’ll say thank you and I’ll receive that,” she says, “but at the same time, my life is so full because of my children that I have taken on and that most people wouldn’t take on. They remind me to suit myself up in compassion.”
That same sort of compassion is what makes wishes possible for children with critical illnesses every day of the year. If you would like to help children and families like Carmel and Sophie, please donate in their honor. “We are privileged to do this work and we are thankful for the generosity of our community for continuing to believe in these wish children, their families and for seeing the value and importance in wishes,” says McConnell.