When I first met Nixon Skenderi, he was 14 months old and only 12 lbs. In his short life, this little champ was already a miracle. Diagnosed with a rare type of Gaucher’s Disease at 6 months, Nixon was given up to three years to live. His parents, who refused to accept the terrible prediction, sought out every possible expert for treatment—which led them to a specialist at the Children’s Hospital of Pittsburgh. After a week of testing there, the family packed up and relocated in hopes of saving Nixon’s life.
Today, says Nixon’s mom, Kristin, he is the only child diagnosed with his type of Gaucher’s Disease whose life was saved by an umbilical cord stem cell transplant and chemotherapy.
Nixon still has a long road of therapy ahead to help him thrive. When he first finished chemo, he was left with an aversion to liquids. Kristin’s been using one of my high fat/high calorie food blends to feed Nixon pureed solids through a g-tube. He’s even able to drink milk and water by spoon now. Kristin and I are in touch all the time, and I’m thrilled to see that Nixon is finally gaining weight.
Like many social service providers in Illinois, I have been seeing early intervention clients, like Nixon, since June without receiving pay. For me, of course, it’s been stressful, but I can’t compare my financial burden to the challenges our state’s budget impasse has caused for the early intervention clients I serve.
Kristin says, “It really makes me angry because Nixon fought so hard to get his life back, and he did it. Now he needs help to walk, to eat and to speak, and I don’t know if he’s going to get what he needs because of this budget.”
All of us are a bit more at ease since Illinois Comptroller Leslie Geissler Munger announced her office will begin making payments to providers soon. But overall, the past few months emphasized more than ever for me how crucial early intervention nutrition is for my youngest clients. And now, as our state officials review the Illinois budget, I worry about funding for nutrition services.
Early Intervention provides government support for therapies for children up to age 3. Without the state’s assistance, therapies such as speech, occupational therapy, physical therapy and nutrition could cost families as much as $200 or more per session. Children who don’t get their needs met at this young age will usually experience increased problems in the future.
The state’s Early Intervention program provided services to more than 20,000 children last year diagnosed with at least a 30 percent delay in at least one area, or who are at risk for delay, according to an article in The Chicago Tribune.
While nutrition wasn’t always a part of the Early Intervention program, I can tell you countless reasons why it must be. Children with developmental delays or those who battle childhood illnesses must first address nutrition before conquering other therapies. A child who needs occupational therapy to learn to sit up or walk needs strength from a nutritional diet. And if this child has an aversion to food or has trouble swallowing—which is so often the case for these kids—nutrition therapy must be in place as well.
Another EI client of mine, Isaiah, has developmental delays and was diagnosed at 4 months with a
failure to thrive. His mom, Sarah, says Isaiah was vomiting 6-8 times a day and couldn’t gain weight because of it. I’ve worked with Sarah for nearly a year to try several different types of formulas and pureed food mixtures until finding a blend that works for Isaiah. I was also directly in touch with Isaiah’s doctors to discuss a treatment other than the NG tube that wasn’t working for him. Now, at 16 months and with a g-tube, he’s gaining weight and has the strength to focus on his other therapies.
All of his therapy, says Sarah, is the only way that Isaiah will start school at age 3 able to sit up, speak and keep down food to the best of his ability.
Let’s hope that our state takes a cue from little champions, like Nixon and Isaiah, to keep fighting for our most vulnerable citizens.