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Fia's Story

Read the story of Fia, daughter of Lian and Matt Kent, who suffers from Alexander Disease, a rare degenerative neurological condition that means she will lose the ability to walk, talk and eat.


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Four year old Fia Kent is a happy, stubborn and cheeky little girl who loves life and loves people, according to mum Lian.

Fia KentFia was diagnosed with Alexander Disease, a degenerative neurological condition, at the age of two and a half. There are only around 100 cases of the disease worldwide, so Fia and her family don’t really know what to expect, but they do know that children with the disease tend to live to about six or seven years old. This makes the time they have together even more precious.

Knowing that Fia’s care needs are going to increase as she gets older, the family got in touch with Chestnut Tree House. They were reluctant at first, concerned that they would be expected to leave their little girl in a hospice building far away, but were pleasantly surprised by what they found. “Knowing that we only have our daughter for a short time, I didn’t want to leave her,” explains Matt, Fia’s Dad. “But Chestnut Tree came and supported us in the community and it’s just given us the confidence to go on.”

Chestnut Tree’s Community Team visit Fia and her family at home, taking Fia out for a few hours or staying home with her whilst parents Matt and Lian enjoy some precious time together. “Fia adores Heidi, her Care Support Worker from Chestnut Tree,” says Lian. “She won’t just go with anybody but she trusts Heidi, she looks forward to her coming round. They have a really special bond which is lovely to see.”

Fia Kent with Mum and DadCrucially, Heidi supports the whole family whilst she is visiting. She will have a chat with Lian and Matt about any concerns they might have, she might point them in the direction of other services or suggest new ways of doing things. The Community Team can also advocate for families if they wish. “The nursing support is hugely beneficial,” says Lian. “I could theoretically be making five different phonecalls to different medical professionals but Chestnut Tree can co-ordinate that so I only have to make one.”

The charity also offers counselling and support for the whole family – Fia’s brothers recently went to a siblings event organised in partnership with Sussex Police. As well as a day of action and adventure, the boys were with other children in a similar situation to them and had play therapists on hand in case they felt the need to talk.

Fia Kent at CTHAs well as receiving support at home, the family have visited Chestnut Tree House, a purpose-built hospice near Arundel, and enjoyed spending time there all together. “Thinking about going to a hospice was a bit scary,” says Lian. “I thought it would be a very clinical place, but it’s really just one big place to go and play. Whilst we were there we all cooked together, something we just cannot do at home.”

Visiting the House serves another purpose for Matt and Lian. “One day we will need more care for Fia and she may need to go and stay at the House for short periods. Spending time there as a family, and having Fia spend time with her key worker, is really reassuring for us. We know she will be happy and looked after.”

Summing up his thoughts about Chestnut Tree, Matt comments, “It really is a fantastic cause. I can’t tell you how much it has meant to have their support, it is absolutely priceless. Chestnut Tree is a really friendly place, if you need their support, just ask.”

Chestnut Tree cares for children who are not expected to live until adulthood and provides support for their families. We know that there are more families in East Sussex who need our care, which is why we launched our Hands Up! campaign, asking people to come forward and ask for help or to pledge their support.

We welcome referrals from any source, on the understanding that it has been discussed with the child or young person’s family. Families and young people may refer themselves.

To find out more about Chestnut Tree’s care in East Sussex, or to find out how you can put your Hands Up! and support Chestnut Tree, visit our Hands Up! pages, call 01323 725095 or email handsup@chestnut-tree-house.org.uk