Alfie's Therapy Fund

Our little bruiser following a fall last week, still happy and smiling even with his Racoon Eyes!! ❤️

Alfie testing out the Trike during his Physiotherapy session last week! ❤️

Alfie's Therapy Fund! ✨️

Background:

In March 2023, our then 20 month old son Alfie had a unexplained prolonged seizure at home which sadly caused extensive damage to the left side of his Brain - the cause we later discovered was due to a gene disorder he was born with; CACNA1A. Due to his acquired brain injury, Alfie now has right sided Hemiplegia and Hypertonia, meaning his right limbs, body trunk, postural muscles and face are all affected, along with right peripheral vision loss to both eyes.

Rehabilitation:

Alfie spent 9 weeks in Birmingham Childrens Hospital and with the right medication and therapy support he regained full neck control, sitting balance and weaned back onto a normal diet. Alfie was then was fortunate enough to get a 12 week placement at the Children’s Trust in Tadworth, a Rehabilitation Centre for children with brain injuries. With the intense sessions and incredible support received during his stay, Alfie learnt how to crawl again, regain some movement in his right hand/arm, progressed with his speech and even learnt some words in Makaton signing.

Community:

Since leaving The Childrens Trust and returning home, Alfie has been receiving input from NHS therapists (Physio, OT and SALT). He wears splints on his right arm during the day and night to support with his Dystonia and an orthotic on his right leg to gain more strength and stability to which he is now able to walk handheld - Alfie is so motivated to get up and move which is such a huge positive for the future as he is getting so much stronger on his feet and we hope that one day he will walk independently.

Seizures:

As a result of Alfies brain injury and/or gene disorder, he now suffers with daily seizures which are sudden, untriggered and cause him frequent harm. He wears a helmet to protect his head when he is out and about but sometimes this doesn't always protect his face. At bedtime we are unable to leave Alfie unattended wearing the helmet due to its risks of choking and suffocation. Therefore, there has been occasions during the night where he has had a seizure in his cot and its resulted in bumps, cuts and bruises which warrant hospital admissions. It's a constant worry for us and although we use a baby monitor and sleep alarms, his seizures are quick and come without any warning so he often gets hurt. We have been researching specialist Safe Beds that are padded and used for those with additional needs and feel that Alfie would benefit hugely if he were to have one.

Rifton TRICYCLE:

"The Rifton Tricycle is an adaptive bike made to help non ambulatory children experience the joy and freedom of independent movement, improve leg strength, posture, balance and range of motion." Alfie was visited during his Physio session last week by one of the reps from Rifton who brought along a Trike model. Alfie absolutely loved it and was able to control it himself which gave him alot of enjoyment. His Physio has strongly recommended that we try our best to get him one as it will build up more strength in his right leg and improve his posture and balance which will hopefully encourage him to become more mobile in time! The Trike also has hand anchors which provide a soft and comfortable support for users who have difficulty keeping their hands on the bar, for Alfie this will be beneficial as his Dystonia causes his right hand to be fully clenched the majority of the time.

Funding:

This specialist adaptive equipment is unfortunately not funded through the NHS and is very costly. Although, there are charities out there that are willing to help towards the overall costs, the waiting times to get an initial response is on average 18 months at present. The Trike itself is £4000 and the Safe bed has been estimated at £2000 approximately for Alfie's specific needs. We were advised by Alfie's MDT to get alternative funding and set up a Go Fund Me page to help get him a Trike and Safe bed.

We appreciate that times are extremely hard for everyone right now and would be so grateful for any support you are able to give. If you're not able to donate financially we would be very appreciative if you could please share this page for us !!!

Thankyou to those who have followed Alfie's story so far and have always believed in him as much as we do - We have one very loved little boy! He's our little hero and deserves the world!!!

Thankyou,

Alfie and his parents