Rose Blossom Trust

In 2010 the chapman family welcomed their beautiful twin girls Darcie Rose and Evie Blossom into the world, the girls were born 12 weeks premature and after a rocky start to life with many health complications that go hand in hand with such tiny babies, the girls were allowed home 8 weeks after they were born to enjoy their first Christmas at home.

Over the coming months, the Chapman family settled into their new family life with their beautiful twin girls completing their family unit and in June 2011 decided to take a much needed family holiday in Spain, staying in a relatives apartment.

Whilst on holiday Darcie sadly suffered her first seizure, being in foreign country only added to the the stress and worry of the situation. The doctors in Spain put the seizure down to a febrile convulsion caused by a high tempreture that was worsened by the Spanish heat.

When the family flew home they saw their own GP who also agreed with the diagnosis of a febrile convulsion

From then on they were always looking out for signs of further seizures and remained constantly on tenterhooks. All they wanted to try and do was put it to the back of their minds, hoping beyond hope that it was an isolated incident and the doctors were correct.

During the following month after a bath Darcie had a second convulsion and Evie, not wanting to be outdone by her sister, followed suit.

From that moment on the girls started having many different types of seizures from Tonic Clonic to Partial and Absence seizures.

During the next few months the families life turned into a living hell. The epilepsy nurses at Warrington referred them to Alder Hay Hospital where the girls underwent tests to diagnose their condition. It was confirmed that they had epilepsy but it wasn’t as simple as that. They were also diagnosed with a devastating genetic condition known as Dravet Syndrome.

The diagnosis came as a huge blow to the family and they didnt know what the future held for the girls. Dravet Syndrome is a drug resistant epilepsy and carries a high risk of SUDEP as well as other medical problems such as autism, learning difficulties and physical difficulties.

With the future of the girls unknown and the worry of the cost of equipment, travel to hospitals and specially designed prams and wheel chairs, family and friends wanted to support the Chapman family by putting money away for the things the girls may need in the future.

Mark and Natalie were extremely grateful for this help as they knew that in time the girls would need more expensive items plus they needed two of everything, even a new pair of shoes for the twins was a massive expense costing over £150 a pair.

The suggestion was made for them to set up a trust for the girls so money could be saved and used whenever the girls needed something that would improve the quality of their lives.

Following this Rose Blossom Trust was set up, the name made up of Darcie & Evie’s middle names. Natalie and Mark were amazed with how quickly the trust developed with people not only donating money but contacting them to arrange fund raising activities.

As a result of the success of this Mark and Natalie has developed the trust into a way of helping to raise awareness of Dravet Syndrome as well as helping other families similar to themselves.

On 10th December 2015, at the young age of 5,  precious princess Darcie Rose fell asleep for the last time. Dravet Syndrome has given another, their angel wings. Darcie was a beautiful and courageous little girl, who despite her condition was always smiling.

Natalie, Mark, Evie and all their family and friends were devastated. Darcie left a huge hole in the lives of everyone she met. And the family wanted to do everything they could to continue the fight to raise awareness of this catastrophic condition and to raise much needed funds for the beautiful Evie Chapman and other Dravet families.

Darcie will never be forgotten and remains at the heart of Rose Blossom trust. Fundraising activities will continue to help Evie Chapman and in memory of Darcie Chapman.

“Rose Blossom Trust’s vision is “With sunshine flowers bloom”, our philosophy is to bring sunshine to Dravet Sufferers and their families lives.”

The charity acheive this through sending families on suitable holidays or respite.” They also support with donating money towards adapting homes to have ramps for wheelchairs, air conditioning in children’s bedrooms or CCTV in there homes, giving families a little peace of mind when not in the same room. 

They have also provided learning equipment such as iPads with learning apps, sensory toys, special days out, as well as offering donations towards the cost of PulseGuard monitors.

Children with Dravet are at a higher risk of SUDEP (Sudden unexplained death in epilepsy) The PulseGuard offers peace of mind at the night time and after seizures have occurred. They become a very relied upon piece of equipment for our children. We offered grants for little Keris Adams and Will (pictured above)

Natalie Chapman

Rose Blossom trust is always looking for new sponsors to help raise funds for their ongoing work supporting Dravet families, they hold annual fundraising events such as the hugely popular Spring Ball, as well as sponsored sporting challenges and events.

If you would like to donate towards their ongoing work or set up a sponsored event for the charity, please click on the link below which will take you to the giving page of their website http://roseblossomtrust.co.uk/?page_id=165

or follow them on facebook https://www.facebook.com/Rose-Blossom-Trust-629307977130548/

Author Info

Kate Farmer

Senior Clinical Advisor for PulseGuard International Ltd. I have 15 years experience working frontline A&E in the UK NHS Ambulance Service. I have gone on to train and research extensively around epilepsy, to provide the most up to date information, clinical advice and support to PulseGuard customers and followers as well as living first hand with the personal effects of Dravet Syndrome within my family

No Comments

Leave a Reply

Your email address will not be published.