A FUND has been launched to help a poorly tot whose heart can’t pump properly and who needs round-the-clock care.
Little Freya Smith from Priory Road is just 14-months-old but so far has endured a tough time in her short life.
She was born 10 weeks early and weighed just 3lbs 5oz when she was delivered with twin sister Poppy.
Doctors discovered both girls had heart murmurs but Freya did not respond to treatment as well as her sibling.
At just 22-days-old she was due to undergo the trauma of open heart surgery, but fortunately her condition improved temporarily and the operation was cancelled.
But within days Freya’s health deteriorated and she was struggling to breathe.
Her condition was so poor that parents Nicola and Adam couldn’t hold her or even touch her.
A paediatric cardiologist from London diagnosed dilated cardiomyopathy, an extremely serious heart disease.
It’s a condition which makes the heart weakened and enlarged and stops it from pumping blood efficiently.
Freya’s mum Nicola said, “There is no cure for dilated cardiomyopathy, only medication to try to treat the symptoms that come with it.
“Freya takes lots of heart medication to stop her lungs filling with fluid.
“Her heart can’t pump very well so she also takes blood-thinning medication to try and ease the strain on her heart.
“We have ongoing appointments and hospital stays for little Freya and now we just take each day as it comes.
“We don’t know what the future holds for our darling daughter, for now the doctors have said if she carries on as she is then she won’t be able to do much in the way of physical activities and will have to take things really easy.
“They also advised us to keep her away from nursery as the risk of her picking up colds and bugs is way too high.
“We can’t let anybody in our house if they have the cold or have had a bug or virus as again the risk is just too high and something as simple as the common cold can start off heart failure.”
In addition to caring for Freya the Smith family is also working hard to raise funds to pay for vital equipment for the youngster.
Mum Nicola has been forced to quit her job at the Bluebell Barn Nursery in Stone Cross because of the risk of bringing home infections. But her former colleagues have been hugely supportive and organised a fundraising event at the Bluebell Hill branch of the nursery in Seavile Drive and the Stone Cross nursery is planning a similar event on August 6. Freya’s five-year-old sister Maya and her friends at West Rise School have also pitched in with a fancy dress day which raised more than £500, enough to pay for a new saturation monitor to keep an eye on oxygen levels in her lungs, and dad Adam also completed the Eastbourne Half Marathon earlier this year.
Maya is also set to take part in a sponsored walk in the next month, with a bit of help from family and friends.
On July 30 at 2pm Maya will set off from Treasure Island car park and walk to the cafe in Holywell.
The next urgent item on the shopping list for Freya is an improved apnoea alarm to monitor her breathing.
Nicola is hugely grateful for all the support she’s had already and is optimistic for the future.
She said, “Freya is doing well and if you look at her it’s not like she’s physically disabled and it’s not like there is anything visibly wrong with her. Five per cent of children recover from the condition and we just hope Freya can do that.
“So, as we said, we take each day as it comes and pray she doesn’t have to go through a heart transplant.”
If you would like to lend your support visit Freya’s Facebook page Freya’s Fund or call Eastbourne Herald on 01323 414492.