It’s a day-to-day process,
In March 2011, Jason and Maria King welcomed their baby boy Mason into this world. Immediately, their new family member was whisked away by doctors leaving the first-time Mom and Dad wondering what was happening to their little boy.
The King’s doctor suspected Mason was going to be smaller than the average newborn, and when the five-pound baby was born the doctor called a geneticist to consult. Mason was diagnosed with Cornelia de Lange Syndrome (CdLS), an extremely rare genetic disorder that from birth causes a range of physical, cognitive and medical challenges. Due to its rarity, physicians cannot diagnose CdLS during pregnancy and do not always recognize it during the delivery process. Aside from weighing five pounds as a full-term newborn, Mason also has other characteristics associated with CdLS including small hands, thin lips, long eyebrows, and a lot of hair.
Mason spent the first three-and-a-half weeks of his life in the NICU, where the visiting social worker recommended the Kings seek Early Intervention services and provided a number of organizations to look into, one of them being Easter Seals. Without hesitation, the Kings chose Easter Seals. The family was familiar with the organization as Maria’s sister, who had Spina Bifida, served as a child representative in the early 1980s.
At one month old, Mason was sent home. “We didn’t know what to do,” said Maria. “It was, and still is, a day-to-day process.”
Upon arriving home, Easter Seals Therapist Tara visited the family to evaluate Mason and to determine which services he would need. Tara recommended physical, speech and occupational therapy to help Mason with his acid reflux, hearing impairment, muscle strength and developmental stages such as crawling and walking. Additionally, Mason starting receiving Hands in Harmony music therapy and in-home services from a local school for the deaf. They also had a visiting nurse come to their home for a year.
“Easter Seals gave us the direction to help Mason get where he needed to be and to reach his milestones on his own terms,” said Maria.”
At 18-months-old, Mason showed great improvements. He started rolling, crawling and speaking small words such as “mama and dada”; things the doctors said he may never do.
“He might have started off slow, but to see where he is now is huge,” said Jason.
Today, two-year-old Mason who weighs 15 pounds, participates in physical and music therapy weekly, and speech and occupational therapy every other week. He also goes to aquatic therapy three times a month. Due to his extensive therapy schedule, Mason can crawl, roll and stand with assistance. With the help of hearing aids he can now hear, mimic sounds and respond to noise on the radio or television. Eating, which was once an issue for Mason, is no longer a problem. He uses his hands to feed himself, and his hand-eye coordination and muscle strength allow him to grab and play with toys.
“We use to be discouraged because Mason wasn’t reaching the typical developmental stages for a child his age,” said Maria. “But Easter Seals reassured us that it was OK because Mason would reach those milestones in his own time, and when he would it would mean a million times more to us and him. We don’t know how successful Mason would be today if we didn’t have Easter Seals.”
Easter Seals has also assisted the Kings in attaining equipment to help Mason outside of therapy. Mason uses a gait trainer to help him stand and feel the motion of walking, as well as a corner seat to assist him in sitting up straight and working on his core muscles. The Kings also use an iPad which allows Mason to play games that increase his cognitive skills, teach him cause and effect, and improve hand-eye coordination.
“It’s amazing that someone comes to your house to help the person you love,” said Jason. “It’s personal, and you’re not afraid to ask questions, especially in a situation like ours where we are all learning day-to-day. Easter Seals makes you feel like you have someone to turn to. They aren’t just another therapist or organization...they are true friends who wants to help you and your family.”
For more information about Early Intervention services please click here.