Rocky Newton’s daughter is among a handful of people with Pitt Hopkins Syndrome who can talk, or walk.
Chelsea, now age seven, is one of the 30 in Canada—10 in Ontario—who have been diagnosed with the rare disease.
Newton, a corrections officer working at the Niagara Detention Centre in Thorold, said he owes a tremendous debt to the Niagara Children’s Centre (NCC) for helping his daughter from the age of eight months.
And when employees of Local 252 participated in charitable events across the province last week, he had no trouble convincing his fellow corrections officers that the Glenridge Avenue Centre should be their charity of choice.
The Thorold team braved the cold to host five fundraising barbecues, along with raffles and 50/50 draws throughout the week, which enabled them to donate $1,867 to the NCC.
According to Newton, “We noticed from a very early age that Chelsea was not hitting milestones. We had no diagnosis at that time but we kept persevering with physiotherapy, occupational therapy and speech therapy. The Centre recognized right away that Chelsea needed support.
“Most people believed that there was nothing wrong with Chelsea or that she would ‘outgrow it.’ Even after years of negative test results, the therapists agreed with us that there was a reason for her delays; the doctors just hadn’t found it yet. Even before Chelsea’s diagnosis, Centre staff treated her symptoms."
At age three, she was diagnosed with Pitt Hopkins Syndrome, a very rare genetic disorder that consists of a mutated piece of her 18th chromosome.
“Most children with Pitt Hopkins Syndrome never walk or talk," noted Newton. "Chelsea is doing both and we attribute that to the constant therapy she received from Niagara Children’s Centre. We are very fortunate to have Niagara Children’s Centre and school all under one roof in our area. There are not many of these types of facilities in Ontario. Niagara Children’s Centre stood by our side, helping us consistently with physiotherapy, speech and occupational therapy, all the while not having a diagnosis. The Centre staff remained positive and were there to help find and offer support in all aspects including therapy and exercises at home, gaining financial assistance, and helping us with hard decisions by guiding us with their expertise. Chelsea learned how to sit, crawl, walk, jump, grasp, pinch, and speak a few words. Now, Chelsea is working on sentences and asking questions, and comprehension among other goals.”
Chelsea utilized the Centre’s early intervention team, the intensive preschool resource program and even attended the Centre school for two years, added Newton.
“The school is a piece of heaven for us! Her daily therapies, small class sizes, music therapy, numeracy and literacy classes have all helped Chelsea enormously. The school and Centre staff helped and supported her day in and day out. They pushed her to her limits; they wooed her tears and celebrated her accomplishments. They also knew when it was time for her to spread her wings. They guided us every step of the way through her transition to her community school – which was a huge success! The staff are experts in their field and we feel very safe and trust them with the care of our daughter. I really do not know where we would be if we didn’t have the Centre.”
Niagara Detention Centre staff’s recent contribution “will help kids receive one-on-one therapy,” Niagara Children’s Centre Director of Development, Marla Smith, told ThoroldNews. “When groups like this select us as their charity of choice, it’s a huge help” for the 5,300 children who receive services at the NCC, ranging from occupational and physiotherapy to speech language pathology, recreational programs, social work and parenting support programs.
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