Please sign the guestbook
for Tommi each time you visit our sight. I would love to know who is checking
Becoming a mum was the proudest and most emotional day of my life. The moment the Dr. passed our beautiful baby boy over into our arms I felt an overwhelming sense of happiness that he had finally arrived and relief as he was seemingly healthy, born a 7 pounds 11 ounces with a good set of lungs on him! We had no idea of what would lie ahead for my innocent little man and our whole family.
We didn't notice Tommi starting to lag behind the other children at the first, as he was always a big baby, so we gathered his lack of muscle control due to his size. However, 6 months, 8 months passed and Tommi still wasn't rolling or sitting up. I suspected early that something wasn't right, but was hoping and praying that Tommi would start to catch up, a 'late bloomer' maybe.
We had our first paediatrician appointment when Tommi was 10months old and he was still 'floppy' -Hypotonia the doctors called it. That in its self wasn't the issue, the issue was it is a symptom of something more horrendous than any parent could ever fathom unless they have been in our heart breaking position.
6 long weeks later and
after many blood tests, eye tests, MRI and CAT scan, Neurologist and Osteopathy
appointments we were told of Tommi's diagnosis. He has an incurable terminal
illness called Tay-Sachs. It's an awful disease that will take his sight, hearing,
cause him to have seizures, lose all muscle control, even the ability to
swallow and smile. It will take him from us before he turns 5.
Every Australian doctor has advised us that he needs palliative care now, and to take him home and enjoy him while he is still responsive as he could decline quickly, however this is too heartbreaking to even consider. We will not give up on the most precious being, most beautiful, loving little boy until we have to.
We found a doctor in Peru who is conducting experimental treatments on patients with Tay Sachs, through a website for a gorgeous little girl in America and her family who are seeking this treatment. We contacted them and further researched the treatment. As this is our only glimmer of hope, we are willing to try anything to save our little man.
Bob and I took Tommi on his second trip to Peru in November 2011 and unfortunatly we watched after we got home, Tommi decling until Boxing Day when he had a massive seizure. We ended up in hospital for 10 days, with the insertion of a nasogastric tube for feeding during our stay. This scared me greatly. I felt like it was the begining of the end.
We have no plans for future treatments, I now undertsand the meaning of 'palliative care' and appreciate the help we have recieved from Tommi's team.
I'm now at peace with Tommi not having any more treatment options so instead of furiously fundraising, we are spending qualtiy time together singing, walking, feeding the birds, and just chillin' with his mummy and daddy:) I am so lucky to be able to spend so much time with my little angel.
Please check the blog or Tommi's fb page for updates on how Tommi is currently going. https://www.facebook.com/tommi.knight and check out the video I made of Tommi's life so far http://www.youtube.com/watch?v=lXb0apbcmjk
If you would like to donate to help cure Tay-Sachs disease, you can donate to the 'National Tay-Sachs and Allied Diseases Foundation' or 'Cure Tay-Sachs foundation' or click the donate button to donate to to me directly.
Jess, Bob and gorgeous Tommi xxxx
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