Esmay is one and lives in Wrexham with her mum Kim, dad Richard and her three older siblings. Esmay has a range of complex medical conditions which started during Kim’s pregnancy.
“When I was 18 weeks pregnant, I was told that Esmay had a heart condition, so we were closely monitored by the hospital. When Esmay was born, we discovered she had a rare chromosome disorder. With the chromosome deletion came another condition called Axenfeld-Rieger syndrome. It causes the back of her eyes to stop forming and will eventually make her blind.
Esmay has since been diagnosed with congenital heart defect, focal epilepsy, global developmental delay, scoliosis of the spine.
“We’ve also just found out that her blood doesn’t produce enough insulin. When she’s poorly, even with a cold, it puts her in hospital as her blood sugar levels drop really low.
“Despite all her conditions, Esmay has a beautiful bubbly personality. Even on a poorly day she can pull a smile out of nowhere.”
“Looking after Esmay requires 24/7 care. It’s hard because my other children have to miss out on things. For instance, they are meant to be in nursery and playgroup, but I can’t always get them there in the morning because of Esmay’s needs. Everyday life is hard.”
How Family Fund helped
Family Fund first supported Esmay and her family in 2021, providing an urgent grant towards hospital costs.
“The urgent grant supported us with the cost of food as we had to spend a lot of time in hospital when she was born. The grant also helped Richard to travel to and from the hospital for work. We live far away from the hospital so the cost of traveling by train was expensive as we don’t drive.”
Last year Family Fund granted the family a break away, so they could spend some quality time together.
“The Haven grant made a huge impact on our family as we got to spend time together as a whole family and make lots of memories with Esmay. It was a beautiful bonding experience.”
“Family Fund has been amazing! It has been an absolute godsend for us. The grants have been brilliant for our family. We don’t know how long we have with Esmay so we appreciate that we’ve been able to make some memories with her.”
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