In August 2010 we had our first born little girl . At only four hours old, she started to struggle and was taken into the neonatal intensive care unit.
We watched her in an incubator for 2 weeks with no knowledge of what was wrong.
We finally went home full of pride but full of anxiety as we still didn’t know what the future held. After 1 week at home we got a phone call from the paediatrician to ask us to discuss her test results. We were told that there was no name for for the condition but that she may never walk, talk or live an independent life. At only a few weeks old, with her beautiful black hair and rosebud lips, it was hard to comprehend she wouldn’t meet any of the ordinary milestones that we all take for granted.
Our world became consumed with speech therapists, occupational therapists, physio and neurology appointments.
At 8 months we saw worrying signs and we suspected she may be having seizures. She was rushed to Alder Hey Hospital where they diagnosed her with ‘West Syndrome’ which is a rare form of epilepsy. This can take away any skills that you have learnt so medication started immediately.
At 16 months old, another worrying time when little lady underwent an operation for congenital hip dysplasia ,we thought this would be the least problematic as it was a planned operation. However, following the operation she suffered a prolonged seizure and the crash team were called – it was the closest we came to losing her. Despite all this, the operation was a success.
After 12 long weeks, a cast from her chest to her toes was finally taken off and she returned home where she was to meet her new born sister , who happened to arrive that day the cast came off!
At the age of three and a half our little lady , whom we were told may never walk, took her first steps and although shaky and uncoordinated they were hers.
This experience was scary and isolating we felt alone , those first moments with our first born baby weren’t consumed with play dates and family get together so but hospital appointments,diagnosis our house not being our home but being taken over with multiple professionals .
This was where Tiny steps was born,we didn’t want others to feel the isolation we felt, we wanted there to be someone to go to get support , speak to like minded people. We found at 8months old a support group at Russett school and this was our life line to meet other families like us .
Tiny steps hopes to provide this support daily in our own sensory centre, play area and social cafe for children with additional needs and their families.