Darcie's Journey
Donation protected
We have decided to set up this page for our beautiful little girl Darcie. She is our whole world, and below is her Story.
Darcie was born on 1st July 2016 after a relatively normal pregnancy and birth. Aside from feeding issues, we believed Darcie was developing at a normal rate until around 6 months. At this point I did start to realise that Darcie wasn't doing things that other babies her age were doing. By 11 months, all Darcie could do was sit unaided. She couldn't roll over, she couldn't pull to stand, she didn't attempt to move. She was happy to just sit wherever I put her. We took Darcie to see a Paediatrician when she was around 14 month old to discuss our concerns around her delayed development and also discussed some jerky movements Darcie made which concerned us. 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 wasn't 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 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 dropping seizures and it got to the point where she couldn't 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 wasn't 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). When we received the diagnosis it was a mixture of relief and devastation and it is going to be a long, challenging road ahead for all of us. We do not know what the future holds for Darcie. There is no guarantee that she will walk and 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. It has become very clear to us that whilst the NHS and Care System will provide as much as we are entitled to, all the services are so stretched and in order for Darcie to receive all of the equipment and therapy she needs to thrive and have the best chances in life, we are going to have to fund a large proportion of this ourselves.
Our £5,000 target is the cost of Darcies's weekly Physio alone for the next 18 months and this is something she is likely to need for years to come. We would of course, love to be in a position where money is no object however to enable us to pay for all the things our baby girl needs... WE NEED YOU x
If you would like to be part of Darcie's journey, a Donation no matter how big or small will mean the absolute world to us. We are planning some fund raisers this year together with our amazing family and friends and we will keep you regularly updated with Darcie's journey.
Thanks so much for reading All our love, Lisa, Simon & Darcie xxx
Darcie was born on 1st July 2016 after a relatively normal pregnancy and birth. Aside from feeding issues, we believed Darcie was developing at a normal rate until around 6 months. At this point I did start to realise that Darcie wasn't doing things that other babies her age were doing. By 11 months, all Darcie could do was sit unaided. She couldn't roll over, she couldn't pull to stand, she didn't attempt to move. She was happy to just sit wherever I put her. We took Darcie to see a Paediatrician when she was around 14 month old to discuss our concerns around her delayed development and also discussed some jerky movements Darcie made which concerned us. 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 wasn't 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 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 dropping seizures and it got to the point where she couldn't 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 wasn't 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). When we received the diagnosis it was a mixture of relief and devastation and it is going to be a long, challenging road ahead for all of us. We do not know what the future holds for Darcie. There is no guarantee that she will walk and 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. It has become very clear to us that whilst the NHS and Care System will provide as much as we are entitled to, all the services are so stretched and in order for Darcie to receive all of the equipment and therapy she needs to thrive and have the best chances in life, we are going to have to fund a large proportion of this ourselves.
Our £5,000 target is the cost of Darcies's weekly Physio alone for the next 18 months and this is something she is likely to need for years to come. We would of course, love to be in a position where money is no object however to enable us to pay for all the things our baby girl needs... WE NEED YOU x
If you would like to be part of Darcie's journey, a Donation no matter how big or small will mean the absolute world to us. We are planning some fund raisers this year together with our amazing family and friends and we will keep you regularly updated with Darcie's journey.
Thanks so much for reading All our love, Lisa, Simon & Darcie xxx
Organizer
Lisa Darvill
Organizer
England