When Kaiden was a baby, he cried all the time and his parents tried everything the doctor could think of to try to help him, but nothing worked. Finally at about 5 months old they realized that Kaiden was having infantile spasms, which are short cluster seizures. He was having approximately 15 infantile spasms a day, with anywhere from 12 to 15 little seizures per spasm. They were related specifically to his sleep. They would wake him up every 40 minutes during the night and during each of his naps. Kaiden received a diagnosis of West Syndrome when he was about 6 months old. This diagnosis also confirmed Kaiden was experiencing hypsarrhythmia (chaotic brain waves). This meant he could not focus or retain any information. This was the beginning of his developmental delays. Kaiden was prescribed medication that controlled the seizures but left a huge impact on his muscle tone. His muscles were so weak he could barely hold his head up and he couldn't hold his own bottle. His seizures had finally stopped and there was hope that he would eventually be weaned him off of the medication, and his muscles would start to get stronger and his delays start to diminish. Unfortunately this didn't happen. Although there have been small gains, and we are so very grateful for each and every one, Kaiden just continues to fall farther and farther behind his peers. His lack of muscle tone prevents him from being able to crawl, stand or walk. He is non verbal. He is significantly lacking fine motor. He had a neuropsychological assessment done at McMaster Children's Hospital which states he is at a developmental age of between 6 and 9 months old. Because of this unexpected lack of development Kaiden's doctors now suspect that there may be an underlying genetic condition that may have caused the West Syndrome and continues to cause Kaiden's current issues. However, so far all of the genetic testing has come back normal. He now has to wait for the Ministry of Health to approve funding to have more tests completed.
With tons of hard work and determination, weekly visits to multiple therapy appointments (both costly private, out of pocket and government funded), Kaiden was thriving! He learned how to move around in a walker, he could hold himself up in a sitting position, he was even starting to feed himself a little bit. Like every other child, those little tastes of independence motivated Kaiden to try to do more. Then the unexpected happened....last October the seizures came back. Not infantile spasms, but general tonic clonic seizures. They, once again seem to be related to his sleep, as they are currently only happening in the middle of the night. On January 2, 2018 Kaiden started having a seizure and, just as with most of his seizures, he was silent. His parents didn't hear him, they didn't wake up. His seizure didn't stop on its own and wouldn't stop with medication. Kaiden ended up on a ventilator, airlifted to McMaster Children's Hospital and in the PICU. He experienced status epilepticus, and now that he has, he is at a great risk of experiencing it again. It is dangerous and life threatening. Because Kaiden’s seizures are silent and because none of the seizure alarms available will help, (as Kaiden has big movements when he is sleeping and tiny little movements when he is seizing, these would cause only false alarms), his parents only feel comfortable if one of them is awake all the time to monitor him and make sure he doesn't go into status epilepticus again.
Kaiden's mother hasn't been able to return to work since her Maternity leave ended. She and Kaiden stay quite busy during the week with various therapy appointments and lots of regular doctors appointments, tests and trips to the hospital. Kaiden's father has been off work with a back injury and he now takes the "night shift” and stays awake all night to keep an eye on Kaiden, while mom takes the "day shift” to care for him and get him to all the places he needs to be. Neither of them can return to work for the time being, causing concern and financial pressure.
That being said, the timing couldn't be worse. On top of all the regular household bills, there are Kaiden’s medical bills, ambulance bills and hospital room bills, plus the cost of meals and parking and overnight stays when in the hospital.
Kaiden is growing and his needs are changing. His mom will soon no longer be able to carry him around or up and down the stairs. The family has some major expenses coming up - Kaiden is going to need lots of new equipment and tools to continue to help him develop and achieve a sense of independence. In the near future he will need a new, larger walker; he is quickly outgrowing his. He will need a wheelchair and his parents will need to buy a van that will need to be modified to accommodate the wheelchair. Not to mention the modifications that will need to be done to the home as well, including a ramp, and a larger front door to fit the wheelchair, and eventually a lift up the stairs and even an accessible bathroom. In a perfect world, Kaiden would benefit most from moving to a new house with a better floor plan and less stairs, allowing him to be more mobile and active in his walker.
This amazing little boy deserves the world. He deserves every opportunity possible to live up to his full potential and abilities. Please help his family provide him with everything they can to help him succeed. They are very appreciative and thank you so much for your caring, compassion and generosity.
DonationsSee top donations
- Ioana Hungerford
- Kim McArthur
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more