Community comes to rescue for family in need
The community was quick to respond when an urgent appeal for help went out on behalf of a toddler with a rare condition.
Annabelle’s Challenge, the UK’s leading charity for Vascular Ehlers-Danlos Syndrome, wanted to help two-year-old Lola-Grace and her family, so chief executive Jared Griffin asked the Shoreham Herald to help.
Having waiting four years for a council house, single mum Hayley Brook was finally found a home in Shoreham but it was just a shell with a huge amount of work needed.
She said the support from the charity had been fantastic and thanked everyone who had come forward to help in the past few weeks.
Hayley said: “When I realised I was moving, I thought I don’t know what to do. I have never asked for help, so part of me was thinking I just want to stay here and struggle. Then Jared said Annabelle’s Challenge would help and not to worry. That’s something they don’t do very often.”
Hayley and her three children, aged from three to ten months, have been in her one-bedroom, first-floor flat in Bushby Close, Sompting, since 2014.
Hayley said: “We have been sharing a bed. There is not enough room for them all to have their own. Lola-Grace has to wear a boots-and-bar device for her legs, which makes it harder.”
Adur District Council, the charity and supporters have been working at the house in Mansell Road, Shoreham, preparing it for the family’s arrival.
Hayley said: “It has been amazing. Four different people offered to decorate and people have donated beds, a new fridge freezer and toys. I am not joking, I started crying. I just didn’t know what to say.
“The house has got so much potential it just has to be made safer. To me, it is about protecting my daughter. Once the garden is safe, having it will mean they are free.
“I let Lola-Grace live a normal life. She does everything that every other child does, you just have to be careful with her. She cannot hurt herself as a simple knock means she has to be rushed to hospital.”
Lola-Grace was born eight-weeks premature and was found to be of the youngest in the UK diagnosed with Vascular EDS.
Hayley said: “I kept saying her eyes looked different and then she started getting random bruises. They found out she has a slightly low platelet count. They also found an alteration in a gene in a blood test in a biopsy and scarring on the brain.
“Her feet were pushed up and in when she was born, and at first she had to wear the boots-and-bar for 23 hours a day.”
Lola-Grace has to attend regular appointments in London, at Great Ormond Street Hospital, St George’s Hospital and Chelsea and Westminster Hospital.
She will soon be getting a wheelchair, as she gets nerve pain in her legs if she does too much walking.
Hayley said she always wanted a big family and manages with the help of her mum, who she calls ‘her rock’.