Welcome

to Our

Family

Our Family

Our Family

“When we first had our diagnosis I googled it, which was pretty scary. I wish this group was around 5 years ago. Now I am not scared, I know where to go, for information, ideas and support” - Gemma, Mum to Luis age 6

“It makes a huge difference to speak to people who don't say 'what's that?' with a confused expression when you talk to them about a 1p36 deletion syndrome.” - Sally, Mum to Abbie age 2

“Leah was diagnosed at 2 years old. None of the doctors could tell me anything about 1p36 deletion syndrome, so I started my own research online were eventually I found this group.” - Donna, Mum to Leah age 3

Lucia -aged 3 Ngaire - aged 5 Charlie - aged 5 Emmylou - aged 2 Isabelle - aged 2 Thandiwe - aged 2 Thomas - 8 months Livy - 21 months Alfie - aged 2 Lillie-Rai - aged 4 Holly - aged 9 Mason - aged 3 Alex - aged 4 Harry - aged 8 Holly - aged 8 Eli - aged 6 Cameron - aged 9 Lexi - aged 9 Kyra - aged 7 Mia - aged 4 Emily - aged 6 Olivia - aged 3 Luis - aged 10 Sam - aged 6 Jess & Alice - aged 11 Chloe - aged 6 Matthew - aged 13 Clark - 11 months

“On a bad day you find support, on a worrying day it's answers to questions that Dr's just can't provide and on a good day - you support someone else that needs help. It's the most amazing group of parents to be part of.” - Laura, Mum to Clark age 11 months

Halle - aged 5 (2) Ameeliah - aged 11 (2) Lucy - aged 12 (2) Oscar - aged 3 (2) Megan - aged 20 (2) Elodie - aged 5 (2) Sam - aged 10 (2) Ben - aged 14 Evie-Anne - aged 6 (2)