Health Care for Kayden

Kayden was born in Saskatoon in 2011 and is the 7 year-old son of Peter and Sylvie Kot and little
brother of Edyn. He was born with complicated medical issues that were misdiagnosed for the
first 7 months of his life. He was finally diagnosed with severe protein and food allergies which
were the source of his malnourishment and ‘severe failure to thrive’. He was given a tube for
feeding which saved his life and which he still relies on today. He is fed a specialized diet of
whole foods and dietary supplements which his family prepares as he has been allergic to all
formulas that are currently available.

In May 2013, Kayden was admitted to hospital with low sodium levels, which were increased too
rapidly. Sadly, the result was a neurological setback/brain injury, which left him completely paralyzed
and all of the gains he had made were lost.

In Oct. 2017, genetic testing resulted in a diagnosis of a very rare genetic disorder –
Cardio-Facial-Cutaneous (CFC) Syndrome. There are very few other children with CFC in Canada
and worldwide. The Kots still face an uncertain future and there is no definitive prognosis for
Kayden’s health. 

The Kots, supported by family, friends and their local medical team, have travelled to the U.S. to
access treatments not available through Sask. Health. They have been helped by the
STAR Center in Denver, the Anat Baniel Method facility in California and by a pediatric
neurologist and nutrition/dietician specialist in NYC. Without these expensive treatments, the family
does not believe Kayden would be with them today. Only a small portion of these treatments were
approved by Sask. Health. The family has been denied aid from Telemiracle in the past. 
Therapy has been extremely helpful to Kayden and we are excited that he is now learning to
walk with a walker. Hopefully his strength will improve to the point that the use of a walker
will be integrated into his daily school life.  Kayden does not communicate with language but does
make his wishes known and is able to understand what is said to him.  He is still learning to accept food orally. 

Although he still has seizures,  they are more under control  with cannabis oil and pharmaceutical meds. 
He is able to attend grade 2 with full-time aid’s  as often as his schedule permits (working around
his therapies and medical appointments) and he loves being with other children.
His favorite thing is playing outdoors and also his‘Toy Story’ shows.

Kayden’s family has an annual fundraiser to pay for local private therapies
to provide for more frequent therapies than are funded through Sask.
Health and their employers’ health care plans. He does private and continuous OT, PT, ABM
and Speech-Language.   As well, there are extensive costs involved with the non-prescription dietary supplements, including specialized formula
(The cost of this formula is ~$500 USD/month and is supplied from the USA). It is not covered by Sask. Health or private health insurance. needed
to ensure Kayden’s nutritional requirements are met.

He will also need to travel in 2020 to Montreal this year for spinal surgery for his scoliosis. 

All money raised the Kot family provide for the following priorities for Kayden: ABM therapy for neuro-movement,
continued appointments with a pediatric dietitian in the US, his specialized formula from the US. , and medical travel to Montreal
so the Kot's can be with Kayden during his surgery and recovery.

The Kots are very thankful for the generosity and support they have received in the past.
Kayden would not be where he is today without the help of the community.

We hope that you will consider donating to Kayden’s health fund so that his family can
continue to provide him with the best quality of life possible.

All thoughts and prayers are also appreciated. There will be a Family Build a Burger
Benefit on Fri. Feb. 7, 2020 at the Travel Lodge.