Tiny steps has been started by a couple who are parents to their little girl Connie who has just turned three.
Connie spent the first two weeks of her life in the special care unit after choking shortly after she was born. After several doctors assessments we knew then the journey as first time parents was going to be very different than most of our friends and families. We were told Connie would have significant developmental delays.
At 8 months old Connie was diagnosed with West Syndrome and spent some time in Alder Hey children’s hospital. West syndrome is a rare form of epilepsy which can be hard to control and have a huge impact on development. At 14 months Connie was diagnosed with congenital hip dysplasia which led to a long operation . Connie gave us all a scare when the crash team were called! She pulled through and went home in a hip cast from her chest down to her ankles for 12 long weeks.
Connie’s condition means we will never know what the future holds. At present she cannot walk or talk,she has involvement regularly from her GP, Neurologist, Paediatrician, Ophthalmologist Audiologist, Physiotherapist, Speech and language therapist and Occupational therapist.
Despite all of this Connie brings so much happiness to those who know her,she has an infectious smile and gives the most amazing cuddles!! she has been at Beechwood farm Nursery in cuddington for 10months and they have worked so hard to help her achieve her own personal milestones along with all the professionals that see her.
Most parents focus on their child’s first smile, first steps, first words but we soon realised how milestones become so unimportant. 3years ago we felt there was a lack of information,communication and support for people like us , this is something we desperately want to change. We want to eliminate the isolation and lack of communication so that no other families go through the journey on their own. We hope to raise enough money to have a sensory room and social cafe for children with additional needs and their families.
Connie’s introduction to life was a struggle, yet she pulled though. The diagnosis from the experts is bleak yet she continues to prove them wrong. Against all odds Connie is here and most importantly enjoys life, living her life through a smile.
In Connie’s life there has been many days we will never forget some good, some not so good and of course she has given us those amazing days, days that will last in our memories for an eternity. On the 22nd of February 2014 Connie did what some thought she never would, this was the day that Connie wanted to prove people wrong this was the day our little girl took her first steps!!!! And although unorthodox and unsteady they were steps and they were her steps, Connie saw something she wanted on the other side of the room and decided she didn’t want to wait for someone to pass it to her so she got it herself.
Well done Connie “A journey of a thousand miles begins with two Tiny Steps.”xxx