Edie and Finty’s Story

Edie and Finty are identical twins aged fourteen years, when both girls showed no signs of attempting speech at the age of two, the girl’s parent first started to seek help. Finty started to have absence seizures at six years and was diagnosed with epilepsy and Edie followed suit aged eight.

After genetic testing at Kings College Hospital both girls were both found to have a rare chromosome deletion linked to autism, epilepsy and possible regression. The girls both had an EHCP (Education Health Care Plan) by the age of four and started to attend a part mainstream and language centre school.

When the girls reached eight years old their cognitive and social ability took a rapid fall and this made life at home and school very challenging for the family. The girl’s disabilities including autism and various mental health issues meant every day activities at home and at school were very difficult and the family were under significant pressure.

We Are Beams started supporting the family firstly offering a direct payment scheme, which helped the family with care at home and most recently, the girls have both enjoyed breaks at Dragon’s Retreat. This respite care allows the family to rest and recover safe in the knowledge that Edie and Finty are being looked after by an experienced and knowledgeable team.

The twins were both very anxious on their first visit in respite care but have both thoroughly enjoyed their visits and are now on their seventh stay. Whilst at Dragon’s Retreat the girls have been encouraged to learn a number of life skills such as using the washing machine, self-care and cooking. The positive impact to the family’s life has been life changing.

“Both girls are now pro-actively taking part in household chores. This is huge step for us and a joy to see!”

Edie and Finty’s Mother, Debbie is so grateful to all the staff at Beams who have been so supportive,

“As parents we had almost forgotten what it is like to be a couple, let alone individuals! These overnight respite care allows us to experience life outside the relentless bubble of looking after children with disabilities. We are in a better place than we have been for a very long time thanks to the offer of Beams’ short break service.”

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