Here is Kaden’s Story
Kaden came into the world with a lot of difficulty breathing and was admitted to NICU (Neonatal-intensive Care Unit) after birth. This was the beginning of the challenging times to come. A few months ago Kaden has been diagnosed with a rare genetic chromosomal deletion on chromosome 2 ( 2q 24.1-24.3q) it has no name; there are about 20 known cases in the world. It had been determined that our son is missing 37 genes in total. Specialists know what only 1 of the 37 genes does. As a result of the genetic deletion Kaden has Central Hypotonia (low muscle tone), global developmental delay, risk for epileptic seizures and other risks that are unknown at this time. Kaden also has Auditory Neuropathy Spectrum disorder which is a rare hearing loss disorder, it can include difficulty comprehending spoken language due to the auditory nerve not functioning properly. We recently learned that Kaden is not a candidate for a cochlear implant which was very difficult to hear however he is an Auditory Brainstem Implant candidate which is a difficult surgery offered outside of Canada (in Italy) that comes with risks and a very high cost.
When Kaden was about two months old we discovered that he was not able to hold his head up. We have since been working tirelessly with him to improve his condition. At 9 months of age the physical capabilities of holding up his head and body are that of a 3 month old baby. Kaden is currently seeing many specialists; Neurologist, Optometrist, ENT specialist (Ear, Nose and Throat), Genetic specialist, Audiologist, Speech therapist, Occupational therapist, Physiotherapist. Despite his difficulties Kaden is a beautiful, happy and easy going baby boy. He is at the age where in order for him to learn and achieve as much as possible he needs to get help now while his brain is still adaptable to learning new tasks and make new neuronal connections. The therapy he needs has to be intense and ongoing in order for him to progress and not regress. Kaden’s physiotherapy is only on bi-weekly basis for two months at a time with 6-8 weeks off in between. He gets to see a physiotherapist only 4 times within two months. This is what is covered by O.H.I.P.
We are eager to help our son and need to do whatever it takes to help him learn to sit, stand, walk, run, hear and talk. Kaden needs to grow and learn to become self-reliant.
This is possible, though it will take a lot of funds in order to receive the medical intervention that he desperately needs. With your contributions we will be able to take Kaden to a very specialized physiotherapy (which is currently not covered through the government) to get him the adequate intensive therapy that he needs. For example CME Therapy (Cuevas Medek Exercise Program) is an excellent specialized form of physiotherapy which provokes natural instinct and teaches children like Kaden to walk and become self-reliant. Intensive therapy like this costs $150 dollars per day. This intensive therapy is done 5 days per week.
Being able to do this for our son brings hope for a better future for Kaden; there is nothing a mother and father wouldn’t do for their kids! The ability to transform Kaden’s life and watch it as it happens is the greatest joy to us. There are no words to describe the happiness Kaden has brought to us, we are learning so much from this little guy.Please help change our baby’s life and his future. Kaden deserves a fair chance at life as it should be. He will benefit tremendously by receiving the intervention he desperately needs.
Aida, Len, Aidan & Kaden
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