GoFundMe page to support mum of toddler receiving palliative care
Louise Walsh
A GoFundme page has been set up to support a young Meath mum and her toddler son who is undergoing specialised palliative care on a daily basis
Kerrie Nelson from Navan gave up work to provide round-the-clock care for her little boy James who suffers frequent and painful muscle contractions due to a condition called dystonia.
The 21-month old was diagnosed shortly after birth with refractory epileptic encephalopathy but it was only in February that a gene mutation known as ARX was discovered as the cause.
The cherished little boy, who has lost his sight in recent months is receiving medication through a PEJ tube and his condition is gradually deteriorating.
Twenty-one-month-old James with doting sister Phoebe (11).
He is off all feeds now and is only on very low levels of fluids.
Kerrie was sleeping on the couch beside her son's specialised cot - which will only fit in the kitchen/sitting room area of her home - until Des Kelly's Furniture kindly donated a sofa bed for her.
The exhausted and emotionally drained mum of two relies on family and the help of Jack & Jill and the Laura Lynn foundations for respite to get some rest or simply spend time with her 11-year old daughter Phoebe.
She has to be on hand to give regular medication to her son and can only comfort James as his muscles contract uncontrollably and painfully for minutes at the time.
The GoFundMe page has so far reached almost €4,500 in less than a week.
Kerrie with baby James.
"We set up a GoFundMe page to support Kerrie and Phoebe through this emotionally and financially difficult time and for any future expenses they may have to face," said Kerrie's aunt Donna Reilly
"We would also like to say a heartfelt thanks to everyone who has been so generous to date and all who have helped in any way."
Anyone who would like to donate can do so here