Nursery nurse Jaycee Wharfe first became aware that her son, Finnley, had a cleft lip at 31 weeks into her pregnancy. She was not prepared for what was to follow. Two days after he was born doctors carried out an MRI scan and diagnosed holoprosencephaly, a rare genetic condition resulting in incomplete brain development.

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 Jaycee regularly uses a suction machine and oxygen for him at night. He is not strong enough to have his cleft lip corrected or keep his head up.

Caring for Finnley is an uphill job for Jaycee and his dad, Rikilee. In March 2017 Finnley became seriously ill with hypothermia and a chest infection and needed treatment in hospital.    

Through Haven House, Jaycee has found support for Finnley and herself. Jaycee says: 

Haven House has made a tremendous difference to Finnley. He loves music therapy and the opportunity to stay and have messy play afterwards.

Jaycee adds:

The physiotherapy sessions with Christina have helped Finnley in so many ways and encouraged him to bear weight on his arms and legs. 

The sessions have given Jaycee and Rikilee confidence to be able to use Finnley’s equipment and to support him with exercises at home.

Finnley was one of the first children to benefit from the extension of Haven House’s Toy Home Loan service to Enfield in 2016. Toy Home Loan provides parents with access to specialist toys which are replenished every three months.

Jaycee says:

We love Toy Home Loan as it helps us access toys which we wouldn’t be able to afford. Finnley really enjoys the tall light tube and anything which is sensory and makes sounds.

The support Jaycee receives from Haven House has also encouraged her to take part in fundraising events, including the Bucket-a-thon, Summer Fair and this year’s Bubble Rush with her best friend Emily.

Jaycee says:

Everyone at Haven House always asks how Finnley is doing and it’s the little things like being offered tea and coffee at reception before he starts his music therapy which makes us feel so welcome.

Jaycee concludes:

Haven House is such a special place to my little family. The staff are so friendly and couldn’t be more helpful. I really hope more people in the local area can support the charity.

 Read more of our family stories.

Watch our film about Finnley and his family and hear how we provide the support they need at home.