MALIK WILL TURN TWO THIS WINTER. THOSE CLOSE TO HIS FAMILY UNDERSTAND WHAT A TRULY MAGICAL MILESTONE THAT WILL BE.
Malik’s parents, Dominic and Claudia, learned over a year ago from neurologists at the Children’s that the little boy has Type 1 Spinal Muscular Atrophy, or SMA, and might not live beyond age two. ”We were shattered,” says Claudia. “We hoped they were wrong.” But blood tests confirmed the diagnosis.
SMA is a degenerative disease that does not affect the brain, but slowly saps the body of its vitality: Malik has experienced certain loss of mobility and has increasing difficulty breathing and eating. Still, “Malik is a happy boy, despite his illness,” says his mom. “He has a smile for everyone and most everyone at the hospital just loves him!”
With help from the Children’s Complex Care service, Dominic and Claudia learned how to live with the family’s new reality. They mastered the use of medical equipment that helps Malik breathe and cough, learned the technique of gavage feeding and acquired skills in the area of therapeutic exercise. “When we need something, Complex Care is there.”
While he does spend time at home, it so happens that Malik was in the hospital when the big day came last spring for the move to the new Children’s. “Everyone knew what to do,” says Claudia. ”We’re really happy with the way it all unfolded.”
Then there was the new hospital itself, built in part through the generosity of donors who gave more than $100 million to help make the dream a reality. Money well-spent, Claudia believes. “Bright and spacious, the new hospital is more comfortable, livelier, more welcoming.” And, very important to Malik’s family, “We can sleep in the same room with him, which we couldn’t do at the other hospital.”
Claudia and Dominic continue to investigate different ways to help their little boy, including an experimental treatment they have found that has helped make Malik stronger and that has made them more hopeful for the future. In the meantime, Malik’s family, his good friends, the Children’s Hospital, its donors and others across the healthcare network continue to pull as one toward Malik’s next milestone.