Help Mirai-Josiah have a chance in life

For: Mirai-Josiah Kushida
Ottawa, ON, Canada
Organizer: Lillian Kitcher
$21,000
of $50,000 goal.
Raised by 187 donors
42% Complete
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The Story

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

Fundraiser Updates

Posted on April 22, 2016

Posted on April 22, 2016

Thank you for your continued support. Here is our second update as to how Mirai is doing with his therapies in Toronto. Mirai has continued to make great gains. In suit therapy he went on a trampoline for the first time in his life. :) At first he very nervous and tense, but after a few tries he started to relax and seem to enjoy it. In swallowing therapy, he has exceeded our expectations. Our goal when we started this therapy was for Mirai to be able to swallow a teaspoon (5cc) and at the end of this block (4/8th) he swallowed 8cc. Here is a short video sequencing what he has been up to from March 21st-April 8th 2016. 

https://youtu.be/XFxz1vr8xzY

Posted on March 21, 2016

Posted on March 21, 2016

Month 2: 

In February, we still continued with the oil; I felt there were so many explanations as to why we may have had problems in our first month.

We changed brands and started using cannimed, this brand is easier to administer. I continued to administer the oil at night to see if this new brand would make a difference in his sleep pattern. There was no difference.

One thing I noted with use of the oil was that Mirai seemed more alert and responsive. His teachers, nurse and therapists said so as well! He would laugh when I spun him around and smile when I played peak-a-boo with him. The oil seemed to be working, even if seizure control was not coming yet- seeing Mirai begin responsive and alert is worth trying with the oil.

In February we saw a reduction in seizures- we had a total of 24 seizures and a total of 14 seizure-free days! This is the longest amount of days that we have been seizure free in a very, very long time! I am hopeful J


Posted on March 21, 2016

Posted on March 21, 2016

Update on our journey with marijuana oil
Month 1:

Mirai and I started our journey with medicinal Marijuana oil in January of this year; we started with Haley’s comet. At the onset, there was no difference in Mirai’s seizures, but during the second week, we had 5 straight days of no seizures! I was excited but still very cautious. Week 3 was very disappointing. In our 3rd week, he had 45 seizures; in one day he had 19!  To add to this, Mirai was having a very difficult time sleeping. I believed the marijuana oil was the culprit.  I felt he was having a hard time sleeping because the oil made him hungry, something other parents had also mentioned, they had noticed with their children. But as Mirai is non-verbal, he could not tell me what was going on. I started to give him an extra snack at night in hopes that it would help him sleep, but it did not. 

Then one night during week 4, Mirai started groaning in the middle of the night like he was in pain. He is non-verbal, but that night I heard him loud and clear.  I thought he was having a nightmare; something was not right. He would groan for some time, and then keep on sleeping. Not once did he open his eyes. At 7:30am, his nurse came and I had her check on him. She could not see anything wrong with him either, but also heard the groans, and he still had not woken up. I rushed him to emergency. They did blood tests and checked his urine- but everything came back clean. All this time, Mirai was still asleep; he did not open his eyes once.  The doctors could not figure out what was wrong with him, and told me to take my sleeping son home. 

Mirai slept and slept. He slept for 34 hours straight. Could it have been a virus?  The marijuana oil? I am still not sure. 

Therefore, to describe our first month with Marijuana oil, Mirai had 89 seizures. This number is a little bit higher than his usual number of seizures without the oil.

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