Our hearts are drenched in bitter sweet joy when we think about our boys.
We have two beautiful boys Aidan (8 years) and Kaden (8 months). Our youngest son Kaden came into the world with a lot of difficulty breathing and was admitted to NICU (Neo-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); 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 2 of the 37 genes do. As a result of the genetic deletion Kaden has what is known as 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 being functional. 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.
We discovered around 2 months of age that Kaden 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.
We are here today to ask for your help. 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 $300 dollars per day. This intensive therapy is done twice per day and 5 days per week. This is just one of the expenses for Kaden, not to mention eye glasses, hearing aids, possibility of brain stem surgery, special baby formula that Kaden needs due to his cow milk protein and soy milk protein intolerance.
What We Need
Dear Friends, we have made a difficult decision to go forward and ask you for financial help. We need to be able to afford CME intensive physiotherapy for Kaden on an ongoing basis which costs $300 per day at five days per week. Kaden got his first pair of glasses because he is far sighted and cannot see well up close, he will eventually need new glasses every few months as he is a growing baby. His first pair of glasses cost $320. We were able to get him hearing aids which cost us $1650 + new ear moulds every couple of weeks to a month which are $160 for both ears. These costs are ongoing and accumulate very quickly. In our desperate attempt to help our son we ask you to help us make these interventions possible for him. Every bit contributed will make a difference for Kaden.
We know we are not the only parents who are going through this so with any excess contributions we get to help Kaden we would like to pay a portion of it forward as our way of saying thank you for helping us. Funds will go to other babies and their families who need help just like we do. Many families come to Toronto's Sick Kids Hospital from all over the world with similar challenges to improve their health, whether it is hearing, sight, or lifesaving surgery. For example giving a child hearing aids and enabling a child to hear for the first time is heartwarming, life changing experience for the child and their family. The investment in Kaden's hearing aids had a significant impact on our financial situation so being able to pay it forward (if even a little) and help others would be an honour. We have made small but meaningful contributions to Sick Kids in hopes of being there for a child and family who need it the most.
Today we are doing what is best for our baby boy, we are asking you to make a financial contribution to Kaden's Fund.
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.
Other Ways You Can Help
We have faith that Kaden will get the help that he needs through your contributions which will allow us to provide the therapies and devices our baby desperately needs.
Please pray for Kaden as we believe he needs that too. We pray for him every day and know that if you pray for our son it can make a world of difference for him.
Please share our story with your friends and family and let them know the help we need today.
Thank you for all of your contributions, it means the world to us.
Aida, Len, Aidan & Kaden