Help get Esmé on the beach

Hi, my name is Carly.

I'm mother to Arthur (3) and Esmé (18 months)

Esmé has a very rare life limiting genetic condition which which less than 700 children in the world are known to have.

It causes severe medication resistant epilepsy, learning delays and hypotonia.

Esmé has to have multiple medications daily, a very Specialist diet, her bloods are checked a minimum of 2 x a day and she has to carry rescue medication with her at all times. She is also part fed and receives medication and fluids via a Nasal Gastric tube.

Life with such a complex medical condition can be hard, it has a massive impact on the quality time I spend with my son too as Esmés needs and medical appointments often dominate our time.

I'm trying to raise some funds to buy Esmé a special cart.

Her special chair can go into it, or she can lie in it. All her equipment would fit in there, and her brother can fit in with her too which they will both love :)

It will mean I can take both my kids out for day trips more easily and if we get the beach ramp we can have family days out together at the beach which is my dream.