Hadley’s Hopeful Heart
By Maryjo Baker, Hadley’s grandmother
Being a grandmother is one of the best parts of my life. My husband and I moved to Boise 15 months ago so we could spend time with our daughter, Marcu, son-in-law Ben and their girls Stella and Hadley. Watching my daughter with her girls gives me great joy. Ben and Marcu are incredible parents who keep the lives of their daughters full of stimulating
and healthy adventures.
When Hadley entered the family, all four grandparents and Stella were at the hospital. Watching a nurse clean Hadley up, I was shocked at how bright red Hadley was. I’ve always wondered since her diagnosis at 18 months if that is typical of babies born with cystinosis. The color soon faded away and Hadley appeared to be a healthy child. But soon her insatiable thirst, too often wet diapers and gradual failure to thrive kicked Marcu’s mother instincts into high gear and after many doctor visits, the heartbreaking diagnosis was presented. Thank God for the cystinosis family who immediately reached out to Ben and Marcu with support, love and critical information to help them adjust to life with a cystinotic child. With the proper medicine, great medical care and a loving family, Hadley is thriving.
Hadley possesses great curiosity about her world. Grandpa takes Hadley to ZooBoise once a week for a class to learn about animals. There she has discovered a fondness for all sorts of creatures, even snakes! Upon returning from the zoo Hadley rattles off facts about whatever animal explored that day and proudly shows off a craft project related to the critter. Hadley’s room is full of items related to her interests and demonstrates her personality. Hadley’s sense of humor is rich and she is starting to tell silly jokes. She loves baby dolls, all of whom she has named, including Mimi, Kiki and Isabella. Hadley likes to nestle them in her arms or tuck them into beds, gently crooning lullabies.
Yes, a horrible disease is also a part of Hadley’s life, but it does not define her. Most days she tolerates her medications quite well, unless the Cystagon® has been increased, then her tummy hurts and she doesn’t want to eat.
Hadley’s favorite playmate is her sister Stella. Stella is bright and understands Hadley’s illness quite well for a 6-year-old. When Hadley catches a cold, Stella worries her sister may end up in the hospital, a situation that has occurred too frequently in Hadley’s short life. Sometimes, Stella helps give Hadley her meds through her G-tube. But most often, the two of them can be found dancing, singing and playing games they make up, filling the house with frequent laughter. They also like watching cartoons, riding their bikes and playing with their dog Sherman and cat Otto.
Hadley offers lots of help around the home. She folds laundry, uses a hand vacuum and dusts like a pro. Stella isn’t as interested in chores, but she sometimes gets in on the baking. Both girls love to paint and draw and play with modeling clay. It makes a bit of a mess, but they do know how to pick up after themselves with some encouragement.
When I watch Hadley and Stella play, I sometimes wonder if Stella will donate a kidney to her sister if/when needed. I imagine them growing up together and experiencing school events, sports, boyfriends, sleepovers — all the things I watched their mom do. I also think about what Hadley may go through because of the disease, and how Stella will help her cope. I pray Hadley will always be compliant with her meds, but Stella will be a huge part of that happening as will her parents.
Ben and Marcu with the help of friends and family sponsor a Hearts for Hadley event to help raise funds for the Cystinosis Research Foundation. The evening raises money for the dedicated researchers who seek improved treatments and hopefully a cure. Businesses and friends donate hundreds of
items for a silent auction, including a handmade quilt I provide. Marcu speaks to the attendees about Hadley and her disease, moving most in the crowd to tears, then a wild live auction cheers the crowd as often frenzied bidding generates large sums.
We need a cure for this illness, so all the people with cystinosis can live their lives free of the issues cystinosis causes. Hadley talks about being a mommy and a phlebotomist when she grows up. Let’s work together to make her dream and all the dreams of people living with cystinosis possible.