MIRAI’S STORY & WHY WE NEED YOUR HELP:
I would like to share a story of a brave little warrior who continues an uphill battle in his struggle for life. On December 18th, 2008 we became proud and happy parents giving birth to a beautiful little boy named Mirai-Josiah (MJ). MJ was perfect in every way possible, and then at two months Mirai had his first seizure. This would be the beginning of an arduous journey involving many trips to CHEO (Children’s Hospital of Eastern Ontario) and Sick Kids trying to get help for my son who was experiencing reoccurring seizures. The doctors were trying but no one had answers and CHEO quickly became our second home.
Mirai’s condition was getting worse and worse and by 12 months he was on five anti-epileptic medications while following a ketogenic diet without success. At this time with special permission from the Ministry of Health, we turned to a new drug called Sitiripentol, but at a hefty out of pocket price of $1200/month as neither OHIP nor insurance companies would cover it. Unfortunately, this option was eventually abandoned, as it had no measurable effect in helping Mirai.
By the age of 18 months, Mirai was having regular seizures and once nearly lost his life. Despite this, he was progressing well developmentally as he was crawling, making sound, rolling over and very social able. If it were not because of his seizures, one would think he was just like any regular baby boy.
As Mirai’s condition progressed, we began to desperately look at alternative treatments and came across a treatment in Japan where they had a lot of success prescribing potassium bromide to children with epilepsy. As Mirai was both a Canadian and Japanese citizen, we opted to go to Japan for this treatment, as all his medications would also be covered under their national health insurance.
Unfortunately within 2 weeks of arriving in Japan, Mirai had another status seizure and suffered brain damage. After 2 weeks in ICU, it became apparent he lost some motor skills and could neither crawl nor hold up his head very well. He even lost hearing in his right ear and had difficulties drinking due to brain damage.
Once he was able, we started therapy to help him regain these skills. It was a long and difficult journey but within a year his hearing and other motor skills started to come back. At this time, Mirai was now 2 ½ years old but developmentally around 1 as he was still not walking and only made sounds when trying to speak.
The doctors in Japan continued to make changes to his medication and finally in September 2010 we were given an official diagnosis of Dravet syndrome. Dravet syndrome is a catastrophic form of epilepsy, which can lead to behavioural and developmental delays, impaired movement and balance, delayed language and speech, and disruptions of the autonomic nervous system.
In Mirai’s case, the doctors didn’t permit us to travel outside the city as the severity of the seizures was forcing us to make monthly trips to the hospital.
Then, in the middle of 2012, the severity of the seizures subsided even though Mirai’s seizures occurred daily, we did not have to go to the hospital. Mirai miraculously started saying words while beginning to walk with some assistance. Finally on August 13th, 2012 at 3 years 8 months, Mirai took his first independent steps and began saying more in both Japanese and English. It was a dream come true! We thought the worst was finally over and in April 2013 we were finally given medical clearance to travel. To celebrate, we took Mirai on a trip to Tokyo Disneyland and he was like a little boy in heaven. It was truly a magical moment!
Less than a month later the seizures started again. They started very small, lasting less than a minute, but now appeared in clusters - stopping and starting again within seconds. We followed all medical advice and gave him emergency meds while trying to bring down the fever but nothing worked. I rushed him to hospital in an ambulance and at the hospital they got the seizures to stop, but Mirai had to be admitted into ICU.
The next day I got an emergency call that Mirai had no brain activity and by the time I arrived, Mirai's organs were already shutting down. Mirai was beginning to die! Hospital staff began life saving procedures but the damage to his brain was unconceivable. Mirai had lost all vision, motor and verbal skills. He had to be fed through a tube and would need care 24/7. This was a complete shock to us as our little boy was walking and talking 48 hours ago. The doctor painted a very grim picture for Mirai and over the course of the next 8 months gave him a 10% chance of making any real progress.
During the daytime I went to work and at night I researched how I could help Mirai. I researched about neuroplasticity and helpful therapy treatments such as Hyperbaric Oxygen Treatment, Conductive Education, Thera suit therapy and the Anat Baniel method. I hung onto hope but none of these treatments were available in Japan, however, they were available in Canada. Around this time the untold stress caused a breakdown in my relationship and left me as a single parent in full care of my son. Working full time and taking care of Mirai was not possible.
So once Mirai was strong enough we moved back to Canada in May 2014 to pursue these treatment options and also because my family was here. Unfortunately these treatments are very expensive and are not covered by OHIP even though these therapies are well recognized in Europe and in parts of the US. In Canada, however, it is considered an alternative treatment, which is not covered by our provincial health care. The past year being back in Canada has been a painful struggle but my saving grace is that Mirai is showing progress by moving more, making noises and slowly coming back. In addition, there has also been an improvement in his vision.
In order for Mirai to continue improving, he will need therapy for a long time. Presently, I have used all my savings and have exhausted donations from family members, church members and friends to help with his therapies. Mirai's therapies have helped him but he desperately needs to continue them. The time has come for me to reach out to the community for your help!
Any donation amount is greatly appreciated. Thank you so much for your support!
Where there life, there is hope. - Lillian Kitcher (MJ's mom).
"So I say to you: Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” Luke 11:9