A dad from Leicestershire, has been shortlisted for an award by a national charity, for the support he provides for his young disabled son.
Cossington’s Phil Emberson, is nominated in the Family Carer of the Year category at the 2022 Sense Awards.
He is father to five-year-old Arlo who has CHARGE syndrome – a condition which affects his heart, hearing and vision.
Over the past year Mr Emberson has enthusiastically taken part in Sense inclusive dance sessions with his son, always recommending song choices with Arlo and enabling him to be able to dance on his own.
Thanks to his father’s support, Arlo has developed in confidence and his physical ability to take part.
In addition to this, Mr Emberson has publicly raised awareness of caring for someone with complex needs through a brave and honest article, which details his experience of caring for Arlo.
In the piece, he describes some of the challenges which he has faced in recent years, including a lack of time for his own self care and also for his relationship with his wife.
“The wife and I have enjoyed one evening out together on our own in five years,” he revealed.
“One night per week we have support from a carer, who comes to our home and will be awake throughout the night. The rest of the time it is me. I sleep next to my son’s bed. For years that was on a sofa bed in our lounge to avoid disturbing the rest of the family when using machines.
“The impact of Arlo’s condition left him needing a tracheostomy for severe obstructive sleep apnoea and to being fed via a tube,” he went on to explain.
“To maintain a tracheostomy and tube feeding requires specialised training. Plus having a tracheostomy means you need someone that is trained to be with the individual at ALL times.
“In the late evening my son needs an antibiotic nebuliser to prevent him getting respiratory infections due to his tracheostomy. After this has been administered, and once his feed is set up for the night around 22:45, there is the washing up and sterilisation of his medical equipment to do. Once all that is complete, I get a bit of time, if I feel able, to do some extra work or do some admin as there is a lot of additional administration that comes with having someone with complex needs.
“With the interrupted sleep there comes fatigue,” he added. “The fact my son needs continual monitoring all day, every day means there is no break and no respite. As stupid as it sounds, fitting a shower into the day can seem like an achievement at times. This means I pay little attention to myself. Whilst never being a fitness fanatic, that side of things has totally gone out of the window.”
Despite the challenges of caring for Arlo, Mr Emberson said that his son’s amazing character makes it all worthwhile.
He was “surprised” to be nominated for a Sense Award.
“I don’t really consider that I’m doing anything different to what most people would do in the circumstances. Also, my wife, Sally, does just as much if not more so she should be nominated too!?” he added.
“Whilst it’s hard on us as a couple as there’s no real respite, Arlo’s such a character and ray of sunshine that it makes it all worthwhile.”
Sense Chief Executive, Richard Kramer, offered his congratulations to Phil for making the shortlist.
“The love he has for Arlo is truly heart-warming and it’s wonderful to see that Phil and Arlo get so much enjoyment from the Sense dance sessions,” he said.
The Sense Awards recognise the outstanding achievements of people with complex disabilities, as well as the staff, carers, family members, volunteers and fundraisers who support them.
Winners will be announced on November 24.
To read more about Phil and Arlo’s story, visit: https://www.stepchangestudios.com/phil-emberson
