Romain is a high functioning autistic teenager (Aspergers,) who was supposed to be taking his A-levels in Chemistry, Biology and French this year. He won't be doing that as he has just been diagnosed with A L L leukaemia type B...and to top it off a chromosome mutation called the Philadelphia chromosome. This is a bit of a twist as the chromosome involved is the same chromosome that is being researched for ASD (Autistic Spectrum Disorder).
It's taken us seven months of doctor chasing and emergency hospital visits to get where we are! Months of CAHMS telling me that he could be depressed or suffering from stress. A misdiagnosis of chronic migraines that actually put his life in danger. And now we are here: At the beginning of an intense and unyielding treatment that will possibly, and most likely, run on for the next three or four years.
Whilst we are happy that we have finally found the right treatment and the right team to get him through this, it has obviously been a shock that his teenage years and future life suddenly look so different.
In fact, the whole family's life looks so different. Childhood cancer turns a mother's life upside down and creates a minefield of issues...and one of those issues will obviously be money. Money to replace his phone that was stolen from his hospital room, money to pay for transport, money to pay for a new mattress, any medical equipment he might need, money to hopefully pay for a private tutor for him in the future....
....and money for all the foods he craves whilst on steroids! That's a joke...I can cover that :)
For all of you that know Romain, you'll know why and how he is so special. For all of you that don't, just know that he always wanted to study BioChem. He knows more about what's going on with his leukemia and treatment than some doctors...obviously NOT his oncologist!
Romain explains his chromosome mutation to the nurses. He explains the protein making properties of chromosome 22 to anyone that will listen! This autistic child with leukemia could grow up to be an adult who finds the cure! You never know!
Thank you for your love x
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- Pamela Houghton
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