Forget Me Not Hospice – Matilda’s Story

Matilda and her twin sister Layla were born six weeks early on 1st September 2011.

At 16 weeks into her pregnancy, Matilda’s mum Sharon was told Matilda had developed Spina Bifida. This was unfortunately just the first of numerous conditions the family were going to discover.

As soon as Matilda was born she was taken to intensive care. As Sharon explains, after three months in hospital they left the Neonatal Unit not knowing what the future had in store.

“Matilda doesn’t have a diagnosed condition, she is known as a SWAN (Syndrome Without A Name) but to us she remains our beautiful little girl who continues to amaze us every day.

“Amongst her symptoms Matilda has got hypoglycaemia and as such we have to be on alert 24/7 because her sugar levels drop so quickly that she can go into a coma within minutes if not spotted.

“Despite all of her challenges, Matilda’s personality always shines through. She has a great sense of humour, is a little miss chatterbox and loves doing everything any four year old girl does. She doesn’t see her condition as a disability and doesn’t let it get in her way.”

A couple of months ago Matilda’s family were made aware of the support Forget Me Not Children’s Hospice offers and how they could be supported.

“We visited the hospice and had a look around. Everyone was so nice and the building is amazing. Matilda goes to the hospice once a week and she loves it. The facilities are fantastic and it gives her an opportunity to socialise with other children and the care team. I have the chance to spend quality time with my other children in the knowledge that Matilda is happy and supported.

“Christmas is a special time for families and I am really looking forward to spending this one with mine at home with the peace of mind in knowing that Forget Me Not Children’s Hospice is just a phone call away.”

For details contact: 01484 411 040 or