Hi, we are friends of Kirsty, an amazingly strong, resilient mum to Baby May Love, who was born in 2024 with an extremely rare genetic disorder….

in Kirsty’s own words….

Our beautiful baby May Love was born on the 16th of March 2024. A perfect little surprise bundle that completed our family. We along with Graicie and Bligh wholeheartedly adore baby May. She spent twelve days in the special care baby unit, on day two of life she had her first seizure. Over these days she was put on medications to control the seizures and we were able to take our beautiful girl home.

Full of excitement and happiness it was amazing to get our girl back to her place in our family home. We had a great two weeks at home unfortunately baby May had her first seizure at home lasting nearly 10 minutes. She was blue lighted in to hospital to be treated with rescue medication. Once stable a few days later we returned home.

Baby May is now 15 months old. Her smiles and little nosies light up any room she is in and she steels the hearts of anyone who meets her.

Now the tough bit and some of the reasons for this page, fundraisers general awareness...

On her six week stay in hospital last year at 3 months old baby May was diagnosed with a gene defect SCN8A. Also known as the "cute syndrome" (a parent named it this when it didn't have a name as it's a rare one) this diagnosis brings with it a list of possibilities that look a bit like this......

* Seizures that do not respond to medication,

* Daily seizures with frequent hospital admissions

* Elevated risk of sudden unexplained death in epilepsy

* Feeding and mobility challenges

* Behavioural and movement disorders

* Trouble with learning to speak and poor vision.

* Intellectual and developmental delay.

* Coughs and colds leading to Status epilepticus.

Baby May has a huge amount of support from consultants, physiotherapists, occupational therapists, dietitian's, epilepsy nurses, complex care team, the children's hospice, various charities and more. This past year have included 2 weekly hospital stays where baby May is having 40+ seizures over a day or so. Each time she is in they are trying there best to get the seizures under control but each time a different medication is needed. Each time there is a possibility that she will have to be transferred to Bristol children's hospital intensive care to be put into an induced coma to try and stop the seizure cycle. May is now on the keto diet to help control the seizures. Baby May is currently on hospital admission 40. Since January she has been losing weight and is waiting for a peg operation so she can be fed directly into her stomach in the hope this well help with her weight gain. We’re not sure what the future holds for baby May And It's certainly been a rollercoaster that we never thought we would be on.

Despite the craziness and uncertainty of life right now, we continue to look for the positives. There are always moments to value and cherish even in the hardest times. To take each day as a new day and to enjoy baby May and family life. To enjoy the smallest things in life, the smile she gives when she's feeling better and noises she makes to let you know she's ok, the finger grabs she gives when she knows your at her side. How excited Graicie and Bligh get when they can come visit her and give cuddles are the most amazing things to see and experience. We are forever grateful to be baby Mays parents and cherish our time with her.

As baby May grows, she needs lots of specialist equipment, such as adapted wheelchairs, special carers and so much more, any money raised, will seriously help to support Baby May

A huge thank to you all and so much love from Kirsty’s Crazy Buddies xx