Sponsored by Make-A-Wish
On a dreary spring day, Sophie Hartman stared at a mountain of medical paperwork on her kitchen table. “It’s overwhelming to come home to a heap of medical bills and piles and piles of documents to go through,” says the 28-year-old single mother of three adopted children.
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.
Carmel Hartman; Image courtesy of Make-A-Wish Alaska and Washington
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," says Sophie.
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.”
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."
Carmel and her older sister; Image courtesy of Make-A-Wish Alaska and Washington
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. Carmel is waiting for her wish. Can you help grant it by making a donation? If you would like to help children and families like Carmel and Sophie, you may donate in their honor here. "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.
Each year, more than 700 dedicated volunteers throughout Alaska and Washington give their time and talents to create wishes for children with critical illnesses and their families. There is nothing more rewarding than helping make a child's most cherished dream a reality, so see what this life-changing organization is all about!
Become a volunteer! We are especially in need of volunteers in the Seattle metro area, Anchorage, Longview, Olympia, Spokane, Tacoma, Tri-Cities, Wenatchee and Yakima.