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Family thanks support of hospice which is receiving a royal boost

PUBLISHED: 07:00 15 November 2019 | UPDATED: 07:56 15 November 2019

Isabella Alford, 10, from Thetford, who has Tay-Sachs Disease. She is helped by East Anglia's Children's Hospices. She is pictured with her parents Deborah and James. Picture: EACH

Isabella Alford, 10, from Thetford, who has Tay-Sachs Disease. She is helped by East Anglia's Children's Hospices. She is pictured with her parents Deborah and James. Picture: EACH

EACH

The family of a girl with a rare genetic condition have praised a hospice charity which is celebrating a milestone event.

Isabella Alford, 10, from Thetford, was diagnosed with Tay-Sachs Disease in March 2011 when she was just two years old.

Tay-Sachs is a rare, progressive neurological genetic condition which causes gradual brain damage.

The 10-year-old was referred to East Anglia's Children's Hospices (EACH) shortly after her diagnosis.

EACH is celebrating the official launch of its new Nook hospice today to be opened by the Duchess of Cambridge, who is the charity's royal patron.

The new hospice at Framingham Earl will replace the charity's old Quidenham base.

Isabella's mother, Deborah Alford, 44, said: "Isabella was a healthy baby and met all her developmental milestones for the first year of her life. At 18 months old her skills began to regress and following six months of appointments and tests she was found to have Tay-Sachs.

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"The prognosis was that she would live up to age four or five. Five months after diagnosis she had lost her ability to swallow so had an operation to fit a feeding tube into her stomach.

"By age three she had lost the ability to smile, lost all of her independent movement, was registered blind and also had several types of seizures."

Speaking about EACH, she added the family has had support from the charity ever since her daughter was referred for help and support.

Mrs Alford said: "Initially we received counselling, access to short breaks and respite, music therapy, hydrotherapy and the opportunity to be part of a child support group.

"All of these things were invaluable at what was a very difficult time of grief and adjustment to our new, unexpected way of life.

"More recently, as the disease has progressed more, we have again needed to access more services that EACH provide, including further counselling, topic and sensory sessions for Isabella.

"EACH have been an important part of our lives now for nine years and we hope that this will continue for as long as we need it."

The family uses the respite routine service at The Nook hospice.

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