#wearblueforluke
Donation protected
Luke was born on 03/01/2006. When he was born he was profoundly deaf. As Luke started growing, he wasn’t reaching the milestones that a normal baby was. He wasn’t talking, sitting up, reaching etc. The doctors told us that he would never do these things, but why?
Luke proved everyone wrong, and on Christmas Day when he was 3 he amazed us all with his first steps! He starting talking, he said ‘mum’ ‘lee’ ‘nan nan’ and ‘brother’ (to his Uncle Spud).
Luke was mis diagnosed on many occasions, we were told he had autism, epilepsy along with many other things. Luke had absences which doctors thought was epileptic seizures. After years and years of no answers and being told all these different things, in September, just last year, a urine sample of Luke was sent to Oxford and they found and confirmed that what Luke had been suffering from all this time was a degenerative disease called Sanfilippo – A, which is the worst possible strain of the condition.
The rate that Luke deteriorated at was absolutely heart breaking for everyone who knows and loves him. He was once able to play on the trampoline, play with his sister Hollie and communicate with everyone, but now, aged 9, Luke is completely bed ridden. He has lost all control of his muscles, he is fed through tubes and medicated through them also. He is on massive amounts of medication to kill the constant pain he is in.
This awful disease has stolen Luke away from us all. The tubes in his throat are closing themselves and covering in scar tissue, his body is suffocating itself.
We have always known that there was no cure for Luke, we just knew we had to manage it and cope as best we could. But two weeks ago, we were given the worst possible news we could ever imagine when doctors told us that Luke has an estimated 2 months left to live.
We are hoping to raise as much awareness as we possibly can, and we are going to throw Luke the biggest, bestest, bluest party this town has ever seen.
Me and my family thank you from the bottom of our hearts for you amazing support
Love, Joni xxxx
https://m.facebook.com/groups/887588427968469?ref=m_notif¬if_t=group_comment_reply
Luke proved everyone wrong, and on Christmas Day when he was 3 he amazed us all with his first steps! He starting talking, he said ‘mum’ ‘lee’ ‘nan nan’ and ‘brother’ (to his Uncle Spud).
Luke was mis diagnosed on many occasions, we were told he had autism, epilepsy along with many other things. Luke had absences which doctors thought was epileptic seizures. After years and years of no answers and being told all these different things, in September, just last year, a urine sample of Luke was sent to Oxford and they found and confirmed that what Luke had been suffering from all this time was a degenerative disease called Sanfilippo – A, which is the worst possible strain of the condition.
The rate that Luke deteriorated at was absolutely heart breaking for everyone who knows and loves him. He was once able to play on the trampoline, play with his sister Hollie and communicate with everyone, but now, aged 9, Luke is completely bed ridden. He has lost all control of his muscles, he is fed through tubes and medicated through them also. He is on massive amounts of medication to kill the constant pain he is in.
This awful disease has stolen Luke away from us all. The tubes in his throat are closing themselves and covering in scar tissue, his body is suffocating itself.
We have always known that there was no cure for Luke, we just knew we had to manage it and cope as best we could. But two weeks ago, we were given the worst possible news we could ever imagine when doctors told us that Luke has an estimated 2 months left to live.
We are hoping to raise as much awareness as we possibly can, and we are going to throw Luke the biggest, bestest, bluest party this town has ever seen.
Me and my family thank you from the bottom of our hearts for you amazing support
Love, Joni xxxx
https://m.facebook.com/groups/887588427968469?ref=m_notif¬if_t=group_comment_reply
Organizer
Natalie Bennett
Organizer
