Mum’s walk for Charlie’s helpers
A mum who is putting her best foot forward for those who give invaluable support to her severely disabled son, describes her daily battle to give him the best life possible.
Dawn Farmer of Blackdown Close in Stevenage will tackle a 10 mile Luton midnight walk with friends on September 1 to raise money for Keech Hospice Care which provides therapy, care and fun to her five-year-old boy, Charlie.
Charlie, who also attends Greenside School in Stevenage, has a rare genetic condition, probable mitochondrial disorder, and severe epilepsy, and needs 24 hour care.
He celebrated his fifth birthday on Sunday – a milestone doctors were not sure he would make.
“He was a healthy active little boy until six months when he developed infantile spasms,” Dawn said. “Since then his condition has peaked and troughed. He was very poorly, then picked up again, but deteriorated where we have now ‘lost’ Charlie as he can no longer respond with reaction or emotion, has poor muscle tone so is unable to sit, stand or move any limbs.”
Since his deterioration, the family home, especially the lounge, has become like a hospital ward, Dawn said.
“We have a suction machine, feeding pump, oxygen – which thankfully he only needs when his chest is bad. He sleeps in a hospital bed in the lounge. My husband Paul sleeps downstairs with him in case he becomes ill overnight.
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“He can show when he’s uncomfortable of in pain, as he gets very agitated in his movements – it’s very small indications and a lot of guess work and getting to know the subtle differences.”
Dawn said the care Charlie receives at Keech, which they visit once a week, is fantastic.
“The support we have received from them and also from meeting other families going through a similar situation has been invaluable.
“We are able to go to the music therapy group which is lovely to be able to go as a family as we can’t really go to ‘normal’ toddler groups. We enjoy the events they hold for their children – such as the jubilee party and Olympic sports day. It is something we can all take part in and create memories.”
Dawn, who also has a healthy three-year-old girl, Evie, said it is very upsetting to see your child suffering, but they try to live as normal a family life as possible.
“When Charlie is well we are able to go out and spend family time together with Evie and family and friends. We are not sure what the future holds, but we are trying to make the most of what time we do have with him.”
To support the hospice go to Dawn’s sponsorship page: justgivingREST HERE…