Just4Children are fundraising to help Darcie receive the therapy to enable her to have as much independence as possible.
Darcie is aged 6 from Braintree in Essex. She was born on 1st July 2016 and apart from some feeding issues, we believed Darcie was developing as normal until she was around 6 months old. At this point we did start to realise that Darcie was not doing things that other babies her age were doing. By 11 months, all Darcie could do was sit unaided. She could not roll over, she could not pull to stand and she did not attempt to move. She was happy to just sit wherever I put her and that is where she stayed.
We took Darcie to see a paediatrician when she was around 14 months old to discuss our concerns around her delayed development and also discussed some jerky movements Darcie made which concerned us. She seemed very wobbly. We were told that they do not treat late walking as a concern until 18 months-2 years so to go back if she still was not walking by 2 years old and, in relation to the jerky movements, we were told it was likely to be a tremor.
Fast forwarding to August 2018, Darcie had her first Tonic Clonic seizure. It was the most scariest moment of my life. We were out at the time and I could see Darcie’s arm moving in a rhythmic motion. Myself and my mum tried to wake Darcie, but she was unresponsive. We called an ambulance and she was monitored in hospital but later sent home. During the weeks that followed Darcie started having head drop seizures and it got to the point where she could not keep her head up for more than a few seconds without it dropping. Darcie had an EEG and she was diagnosed immediately with Epilepsy and put on medication. Whilst all of this was going on, Darcie had also had an MRI scan and had some genetic tests done to try and establish the reasons for the development delays as Darcie still was not walking at age 2 and all areas of her development were now much further behind than they should have been.
In December 2018 we received the results from the genetic testing and Darcie was diagnosed with Angelman Syndrome. Angelman Syndrome is a complex genetic disorder that primarily affects the nervous system. Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia). Most affected children also have recurrent seizures (epilepsy). Darcie experiences 6 different seizure types.
When we received the diagnosis it was a mixture of relief and devastation and we knew it was going to be a long, challenging road ahead for all of us. We do not know what the future holds for Darcie, but every single hour of therapy she has is to enable her to live her life as independently as possible. It is unlikely that she will ever be able to communicate verbally, but what we do know is that we will give her the best life possible.
When we received the diagnosis, It quickly became very apparent that the NHS is not able to offer Darcie anywhere near the amount of therapy that she needs. She is entitled to 8 hours physio therapy per year!
It was at this point we knew we needed to do something to help her with private physio. The sessions are currently £80 per hour and this therapy will be needed for years to come. Those of you that have been on this journey with us for a while, will know just how life changing the therapy is.
Darcie has the determination and the patience to try and try until she succeeds. All she needs is your help.
Follow Darcie on Instagram and Facebook
