Jaycee Wharfe, from Enfield, will be one of 200 people taking part in the 10km Sparkle Walk in aid of Haven House Children’s Hospice and she is urging the local public to join her.

The hospice, in Woodford, provides specialist care for children who are seriously ill or have a life-limiting condition, and cares for Jaycee’s three-year-old son Finnley.

Jaycee first became aware that Finnley had a cleft lip at 31 weeks into her pregnancy. Two days after he was born doctors carried out an MRI scan and diagnosed holoprosencephaly, a rare genetic condition resulting in incomplete brain development.

Jaycee, 27, said: “Finnley is visually impaired, has epilepsy and severe global delay. He struggles to remain upright without support. He needs a lot of different medication and we regularly use a suction machine and oxygen for him at night.

“Sadly, there’s no cure for Finnley’s condition, but with support from Haven House Children’s Hospice we can help give him the best quality of life. We love going to Haven House and seeing the improvement that Finnley has made.”

Through Haven House, Jaycee has found support for Finnley and herself. Finnley enjoys the music therapy, yoga and play sessions. Physiotherapy has encouraged him to bear weight on his arms and legs. The sessions have given Jaycee and her partner Rikilee confidence to be able to use Finnley’s equipment and to support him with exercises at home.

The family also benefit from the hospice’s Toy Home Loan scheme which enables Finnley to access specialist toys which the family would not be able to afford.

The Sparkle Walk event will take place on Friday 10 May, starting at Christchurch Green, Wanstead and finishing at The Cuckfield, Wanstead.

The route encompasses Epping Forest, South Woodford and Wanstead, with a new halfway Sparkle Station on the grounds of Haven House.

Jaycee, who will be taking part in the event with 11 of her friends and family including Finnley’s grandma and aunty, said: “Haven House is such a special place to my little family. I cannot imagine how we would have coped without Haven House. Every time we walk in to the hospice, it’s like we are walking into a big hug. The staff are so friendly and couldn’t’ be more helpful.

“The hospice is a calm, safe and extraordinary place for anybody facing difficult times. We feel privileged to have their support. This is why I am taking part in the Sparkle Walk. I need to say thank you for such support and kindness and words aren’t enough.

“I really hope more people in the local area can support the charity and sign up to the Sparkle Walk. It’s important to give back to the hospice, which is our local children’s hospice, because it relies on donations and supporters for 80 per cent of its funding.”


Participants must be aged 13 or over and entry is £15. Registration includes a t-shirt and a glass of fizz.

To sign up, visit https://www.havenhouse.org.uk/event/sparklewalk2019