A MOTHER who tragically lost both her young daughters to a rare degenerative disease has been on a fundraising mission in their memory.
To mark turning 40 this year, Helen Cookson from Chichester has been taking on 40 challenges for two charities who supported the family in their time of need.
Helen’s world was turned upside down in 2007 when both her daughters, Rebecca and Rachel, were diagnosed with Late Infantile Batten’s disease, a degenerative neurological disorder that is, currently, always fatal.
Sadly Rebecca, aged five and a half, passed away in December 2008.
At this time Rachel had shown no signs of the disease. However, not long after Rebecca died, Rachel started having seizures and her speech began to deteriorate.
She spent the last nine weeks of her life at children’s hospice Chestnut Tree House and in November 2012, aged just seven, Rachel also died.
Helen described the care she received from both Chestnut Tree House and The Snowdrop Trust as ‘invaluable’.
She said: “During Rebecca’s illness we were introduced to Chestnut Tree House.
“Initially the community team visited us regularly to provide a few hours of respite care and, as Rebecca became more unwell, we started using the in-house services too.
“During this time our family received invaluable help from Chestnut Tree House, without which we couldn’t have coped.
“We all valued our time staying there; it was like living in a bubble where all the day to day reality evaporated.”
Helen turns 40 this Saturday and among the challenges set by friends and family have been learning to swim and singing in public.
Her latest challenge was to have a complete makeover in preparation for speaking about her experience at the Chestnut Tree House’s snowman spectacular fundraising ball in Brighton in December.
Knowing it was one of her challenges the charity arranged for her to hire a dress and have the makeover, something Helen admitted she was ‘petrified’ about as she hates putting make-up on and rarely wears dresses.
Helen’s husband John came along to support her and said: “She looks beautiful. I am so proud of her and Rachel and Rebecca would have been proud of her too.”
To help Helen’s fundraising mission visit: www.justgiving.com/Helen-Cookson4/
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