At birth Caleb suffered from respiratory problems due to reduced oxygen levels and was placed in an incubator and tube fed while receiving antibiotics through intravenous for five days. After being discharged from Frances Perry hospital, he was brought home and later that same afternoon had difficulty breathing. He was rushed back to The Royal Children’s Hospital emergency department where he was admitted straight away. He was on forced ventilation for few more days where they conducted Cardio tests to reveal an open valve in the heart.
Once he was discharged, Caleb continued to grow, laugh and play like a normal baby but was always plagued with “minor” issues like many colds and ear infections, choking episodes, loud breathing, interrupted sleep. Many visits to the doctor suggested that he needed Grommets as there was a build-up of excess fluid in the ears. When Caleb was about 8 months old he had his first set of grommets done on 22nd September 09 at Masada Private Hospital which helped him continue on with his life. But the problems continued and after a year he needed the next set of grommets, so back to the drawing board and again on the 19th October 10, he had his second set of grommets. At the same time his adenoids and tonsils were done. But the “minor” problems remained.
After seeing his paediatrician and listing all of his symptoms, it was recommended he has an MPS screen test. They confirmed that Caleb had Hunter Syndrome (also called MPSII). Hunter Syndrome affects a child both physically and mentally, although its effects are different in every child. Generally, cognitive development slows between ages 2 and 4 and then regresses after that. Physical effects from Hunter Syndrome begin at birth and include damage to organs, joints, breathing difficulties etc. For those that know Caleb, you would have observed that he falls a lot, has difficulty with his joints and stiffness, has unexplained diarrhoea, chokes easily, breathes loudly, etc. – all of these are part of his condition.
Those who are mildly affected may have a reasonably normal life span if their physical problems are not severe. Sadly the prognosis is not good for Caleb as those who are severely affected are likely to die much earlier. Death results from complication associated with the disorder such as heart disease or respiratory problems.
Hunter Syndrome is further categorised as TYPE A and TYPE B and children with TYPE B can receive weekly enzyme replacement therapy (Elaprase) that helps break up the GAG’s and address some of these physical effects. This treatment for TYPE B patients is government supported.
Caleb has been deemed ineligible for the enzyme replacement medication as a committee appointed by the government does not believe he meets the criteria, as he has been categorised as TYPE A. Under the committee’s guidelines TYPE A patients are not entitled to Government supported treatment. All studies thus far indicate it is difficult to distinguish between TYPE A and TYPE B categories. MPS Letter
Funding the treatment privately would cost between $450,000-$500,000 based on Caleb’s current height and weight. This would increase in proportion to his physical growth. The huge sum of money involved is beyond the family’s means alone.
Caleb has faced challenges and set backs from the day he was born, yet he continues to smile. He gives the best hugs and kisses you could ever imagine. He gets loud and animated when his favourite program “THE WIGGLES” are on.