Francis Read

We are fundraising to provide Francis our Grandson with a Hydro pool and a physiotherapy room. We are hoping to convert our garage to provide this, unfortunately we have used our retirement pay out to future proof our house so that Franci always has a home. So we need a little help and asking for help is the hardest thing to do.
Francis stopped breathing at 6 weeks old was resuscitated by Grandma, who luckily is a nurse, he was then blue lighted to hospital he remained at risk for almost an hour before being stabilised. After a few days in NICU his life support was switched off with doctors not expecting him to react well but he defied all odds and after nine months in hospital he came home to us, every day since has been a blessing and we are slowly crossing off all the things we were told he would never do and replacing them with things that he can. The first "inch stone" was his smile that lifts our hearts every single day and keeps us going on this journey.
Francis was nonverbal but at 7yrs old was identified as pre verbal another inch stone, he is diagnosed with inactive hydrocephalus, Cerebral Palsy (level 5 the most severe), his right hip has never been in its socket, tilting his pelvis backward; and he has neuromuscular Scoliosis a curvature of his spine currently at 75 degrees, complicated by left sided hypotonia; there are no plans to carry out surgery on straightening his spine by attaching metal rods or keeping his hip in socket with a metal plate as the spine needs to be done first which would need to be repeated every 6-12 months as he grows, the magic rods which can be extended with a magnet in clinic was an option, but the surgeons consider this too high risk and have recommended a review in 6-8 years with only monitoring and pain relief if necessary until then.
Franci wears a body brace for at least 12 hours a day to delay the increase of the curvature that will impact on his major organs and the decision not to operate on his spine or hip last year means this will deteriorate. He also has to wear ankle and hand splints to prevent contractures. So, he loves a good massage and a long soak in the bath with bubbles and lights.
Hydrotherapy has been recommended by the surgeon but there is no access available in the locality. He does have this once a week at school when it’s working.
Franci is fed through a peg tube in his stomach overnight and is supported with a SAT’s monitor as he also suffers from mild sleep apnea. We sleep with a baby monitor to be able to react to any distress as Franci cannot move independently so we support him through the night when he cramps and/or gets distressed. To prevent this Franci has position moves 2 hourly through the day and a leg arm and back massage before bed and in the morning when he wakes.
Franci does take limited amounts of food orally and he enjoys this experience but is always at risk of aspiration, so far his chest has always been clear.
He is registered blind but has some close vision which his glasses help with, and he recognises bright colours and people. His hearing is good and does respond to requests to move his head or hands, but this takes time. but worth it. Francis is a full-time wheelchair user as he will never be able to mobilise independently or try to without surgery and intensive physiotherapy.
One of Francis’ biggest joys is music and although he is non-verbal, he enjoys singing along to music in his own way, he has his daily physio and stretches from us to tunes like YMCA and I will walk 500 miles, but adores the Royal Marine Band tunes too and we take him to their concerts whenever we can.
Francis will often still be singing to himself many hours after going to bed, and when we say goodnight and I love you he will respond with the only two consistent sounds he has of "wuv wuv"- this is him telling us he loves us too.
Francis is currently under a number medical professionals and as time goes by without surgery it is expected that Francis will start to become more and more uncomfortable and this can be mitigated by both hydrotherapy and physiotherapy, without this it will be medication which will affect his ability to communicate with us; so we have find a way to prevent that alternative.
There is no hydrotherapy provision within our local area or within a 50-mile radius that can accommodate a child with disabilities. So, we bought a blow-up hydro pool and put it inside a tent in the garden which he loves but this can only be used on very hot days to manage his temperature.
To overcome this we have had plans drawn up and obtained planning permission for a Hydro therapy area with a physiotherapy room to be built at the back of our garden, this will give Franci the ability to have daily hydro and physio sessions without the need to travel excessively, this is especially important as Francis suffers from a compromised immune system, so having the ability for daily hydrotherapy at home protecting his health and holding back his spine curvature until surgery is available.
We have consistently tried to make his disability a routine part of daily life and his home and specialist equipment an acceptable part of this too, particularly as we have also cared for his sister from birth. So, the hydrotherapy would become a fun activity allowing space for us all toto join in with him increasing Francis’s quality of life and keeping him pain free as he grows.
Franci uses buttons to communicate and make choices and every day he gets a little better at moving his hands to make his choices with loads of encouragement. The benefit of a hydrotherapy pool and a physio room for Francis would be life changing, improving and increasing his movement range and his ability to communicate without the use of any sedative medication which would undoubtedly destroy his progressing communication skills.
Thank you for your interest, please support us if you can by donating and/or by sharing this page further to hopefully help Franci get the help he needs to grow and develop.

For more information please visit www.fearlessfrancis.com