Connie’s Story

On the 20th August 2010 we had our first born daughter called Connie. At only four hours old, Connie 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 with Connie 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 reveal Connie’s test results. We were told that there was no name for Connie’s 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. To us, she was perfect.

Our world became consumed with speech therapists, occupational therapists, physio and neurology appointments.

At 8 months Connie began to show 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 strip you of any skills that you have learnt so Connie started on medication for this called Vigabatrin immediately.

At 16 months old, Connie underwent an operation for congenital hip dysplasia and of all her traumas we thought this would be the least problematic as it was a planned operation. However, following the operation Connie had 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 and Connie began her road to recovery.

After 12 long weeks, a cast from her chest to her toes was finally taken off and Connie returned home where she was to meet her new born sister Betsy (we never dreamed of the positive impact Betsy would go on to have on her sister).

At the age of three and a half our little Connie, whom we were told may never walk, took her first steps and although shaky and uncoordinated they were hers.

Connie has gone from strength to strength and with her sister Betsy showing her the way there has been no stopping her.

In July 2015 Connie was to leave Beechwood Farm Nursery – a place that had a huge impact on her progression – and although extremely sad to leave, it was time for Connie to move on so in the September she started at The Russett School in Weaverham.

Connie is still unable to talk or verbalise what she wants but with the hard work and dedication of the Russett staff, her parents and her sister, Connie is slowly managing to communicate certain things in her own way.

in May 2016 Connie embarked on her own challenge for our charity and with a little help from her Daddy and Uncle Jamie, Connie was to reach the summit of Mount Snowdon proving all the doubters wrong and walking the final few steps herself – a proud day for us all.

Connie continues to thrive at home and in school. Although day to day life will always have its challenges for her, anyone who knows Connie will know that she continues to face every day with a smile on her face.