An 18-month-old girl will eventually go blind due to a rare condition.
Esmay Parry from Wrexham has a rare chromosome disorder. This has led to another condition called Axenfeld-Rieger syndrome which causes the back of her eyes to stop forming and will eventually make her blind.
Esmay's parents Kim and Richard had noticed something was wrong during Kim's pregnancy at her 12-week scan. They were even offered an abortion when Kim was 22 weeks pregnant as Esmay's heart stopped growing.
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They were referred to to Liverpool Women's hospital for further tests and it was found baby Esmay had an irregular heart beat.
By 20 weeks Esmay's heart stopped growing and at 22 weeks the couple were told Esmay wouldn't survive past birth and Kim was offered an abortion. However she decided to continue with the pregnancy as she wanted to give her little girl a chance, Wales Online reports.
Kim, 38, said: "At 22 weeks I was offered an abortion because one side of her heart had stopped growing but I refused as I believe every child deserves a chance. When Esmay was born she had a blood test which discovered that she had a rare chromosome disorder in which the top end of chromosome six had been deleted.
"As a result of the chromosome deletion comes another condition called Axenfeld-Rieger syndrome which causes the back of her eyes to stop forming and will eventually make her blind."
Kim said Esmay was born by C-section and then "whipped straight off" to Alder Hey Children's Hospital because of how unwell she was. Kim added: "She was 11 days old when she had open heart surgery. It was absolutely horrific, she was only supposed to be down for seven hours but it was 10 and a half hours.
"When we saw the surgeon he said she was one lucky little girl. If we had waited another day she would have died, he said."
Esmay has since been diagnosed with a congenital heart defect. She also has a diagnosis of focal epilepsy, global developmental delay, scoliosis of the spine.
Kim continued: "We've now just found out that Esmay has an issue with her bloods in which her body doesn’t produce enough insulin. When she’s poorly, even with an average cold, it puts her in hospital because her blood sugar levels drop to a really low level so she requires insulin shots.
"On top of this Esmay has reflux in her kidneys so she’s on long-term medication, she’s peg-fed due to unsafe swallow, she’s nonverbal, and she can’t walk so she uses specialised wheelchairs.
"However, despite all her conditions, Esmay has a beautiful bubbly personality and even on a poorly day she can pull a smile out of nowhere.”
Kim and Richard have three other children, aged nine, four and three, who "adore the bones" of Esmay. The family is spending as much time as possible with Esmay, who requires round-the-clock care, as they don't know how long they have with her.
The Parry family have been supported by Family Fund which provided a grant to support the family with the cost of travelling between Wrexham and Liverpool. More recently the charity provided a grant so the whole family could go on holiday and spend time together.
Kim said: "It’s hard because my other children sometimes have to miss out on things. My son is meant to be in half-day nursery and my other daughter is meant to attend a playgroup but I can’t always get them there in the morning because of Esmay’s needs.
"Everyday life is hard sometimes. We’re never all together as a whole family.
"Family Fund have been amazing. They’ve been an absolute godsend for us. The grants have been brilliant for our family and 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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