MEET THE KIDS OF 2018
MEET VINNY
From Vinnys mum....
So Vinny is from a RAF family , born in Cyprus in 2007 and had his accident in May 2009, he had a near drowning, but gulped enough water to cause a hypoxic brain injury , he stopped breathing and was resuscitated by the raf medics who managed to get him breathing. He was put into a chemical coma to rest his brain as we were airlifted from Akrotiri to Bournemouth then to be put in PICU at the Southampton General where we spent 3 months in. He has chest drains in cause his lungs were deflated due to the water pressure in the pool and he had pneumonia also. When he woke up from coma he was dealing with Distonia which is very high muscle tone so he couldn't bend or control his muscles, so he was biting his lips hard and making his hands bleed. He had a lot of medication to relax him and physio within the hospital grounds. While this was going on us as a family lived on the hospital grounds because we had no home to live in . My eldest boy dennis was living with his grandparents in North Wales so he was disrupted too much. So leaving PICU then to HDU for a couple of days he was fitted with a gastro tube because he couldn't eat by mouth and he was suffering with terrible reflux. He has had many operations because of his muscle tone, like feet straightening and aligning his hips. Then he had a Baclofen pump inserted into his belly so the drug goes into his spinal fluids so hes not so tired and his muscles are relaxed and he cant throw up the medication if he got poorly. Since then hes enjoying life more and is very social able like he was as a toddler and very cheeky. He can speak alittle but only little words and he eye points to show you what he wants.. He loves music and films, like star wars and batman lego films and mr bean. He is a very happy little boy and is very interested in everything and loves to be silly and be around silly people. He also loves come dine with me because of the narrator .His future is not life threatening but he is quadriplegic and relies on me as his mum to get his basic needs , his dad is away a lot out of the country so it can be tough.
From Vinnys mum....
So Vinny is from a RAF family , born in Cyprus in 2007 and had his accident in May 2009, he had a near drowning, but gulped enough water to cause a hypoxic brain injury , he stopped breathing and was resuscitated by the raf medics who managed to get him breathing. He was put into a chemical coma to rest his brain as we were airlifted from Akrotiri to Bournemouth then to be put in PICU at the Southampton General where we spent 3 months in. He has chest drains in cause his lungs were deflated due to the water pressure in the pool and he had pneumonia also. When he woke up from coma he was dealing with Distonia which is very high muscle tone so he couldn't bend or control his muscles, so he was biting his lips hard and making his hands bleed. He had a lot of medication to relax him and physio within the hospital grounds. While this was going on us as a family lived on the hospital grounds because we had no home to live in . My eldest boy dennis was living with his grandparents in North Wales so he was disrupted too much. So leaving PICU then to HDU for a couple of days he was fitted with a gastro tube because he couldn't eat by mouth and he was suffering with terrible reflux. He has had many operations because of his muscle tone, like feet straightening and aligning his hips. Then he had a Baclofen pump inserted into his belly so the drug goes into his spinal fluids so hes not so tired and his muscles are relaxed and he cant throw up the medication if he got poorly. Since then hes enjoying life more and is very social able like he was as a toddler and very cheeky. He can speak alittle but only little words and he eye points to show you what he wants.. He loves music and films, like star wars and batman lego films and mr bean. He is a very happy little boy and is very interested in everything and loves to be silly and be around silly people. He also loves come dine with me because of the narrator .His future is not life threatening but he is quadriplegic and relies on me as his mum to get his basic needs , his dad is away a lot out of the country so it can be tough.
MEET MONICA
Mum says....
She was born at 27 weeks via crash section because my heart stopped was self ventilating within 24 hours we were transported from Liverpool womens hospital back to our local nicu and on day 19 she suffered a febrile convulsion followed my a major stroke. Unfortunately the hospital (not southampton) didnt tell us anything other than she would be slow to progress but i knew this anyway due to her sisters prematurity we went home and life passed like normal breast and tube feeding until 8months of age where she began seizing during and after every feed she was placed on anti convulsant meds and nebulosers due to constant chest infections and suspected bronchitis but it didnt do much good. At 18 months she became incredibly poorly with double pnuemonia and Monica was sedated placed in a medicated coma and intubated we were given a 5% chance of survival due to her heart, brain etc taking such a battering after a few days they said it would be kinder to remove her tube as she wouldnt live without it and would almost certainly be in pain for whatever short life she had left, I agreed to the removal of her tube but she continued to breath i was told she was coming to an end and that this may go on for five mins or so....well after 30 minutes a nurse came in and my girl was still breathing I begged her to look at Monica again and within minutes docs came flying in informed me the antibiotics, steroid etc must be working they reattached her oxygen and two weeks later I left the hospital with her. Turns out she was born without the flap at the back of the throat that stops food and drink entering her lungs. Monica was diagnosed with peri ventricular luekomalacia and spastic quadraplegic cerebral palsy at 4 whilst on holiday in Egypt i paid for a private mri, shortly after she was diagnosed with non specific complex partial seizures a side effect of her Cp. Shes had to contend with so much but is such a bright happy little girl she had an op Nov 16 to release her groin achilles and hamstrings then was dropped in full leg casts by a dinner lady at her last school and spent 6 months at home without intervention. My girl is now up and taking a few steps independently something I never dreamed we would see and I think her personality and her fighting spirit has pulled her through. She has a 17 year old sister Myia, a 13 year old sister Shayla and rainbow baby sister Seraphina and an even younger sister Aria who is two she has myself and my partner her soon to be step mama Lucy who love her dearly and obviously her best friend Phoebe Manley.
MEET SAM
From Sam's family...
Our family is me, Mum, Steve, Dad, Emma, 14 & Sam 10, but very nearly 11. Sam was born with a rare chromosome disorder called 1p36 deletion syndrome. It has meant Sam has profound learning difficulties and complex health needs and as such is very vulnerable. Despite this most of the time he is a happy boy even though he faces a lot of challenges. He has daily seizures, often finds himself in hospital with chest infections, is tube fed and can’t walk or talk. We have nearly lost him more than once. We are currently awaiting the go ahead for major surgery for his hip.
We try very hard to do ‘normal’ family things like going to the beach, cinema, holidays but as Sam gets bigger it is getting harder to manage.
Our budget for equipment is even more limited now as Steve has reduced his hours, as a nurse, to have more time to care for Sam. We have discovered it is almost impossible for us both to have ‘proper’ jobs.
The item of equipment we are currently looking at is a 3 wheel buggy. This will allow us to go ‘off-road’ with Sam and even onto the beach.
ROSEWOOD FREE SCHOOL
Rosewood Free School is a day school for pupils aged 2-19 years with profound and multiple learning difficulties (PMLD). The school accepts pupils from Southampton and Hampshire. This includes a lively Post 16 provision “The Hub” which also caters for learners with severe and complex learning difficulties including additional physical and sensory impairments. Pupils attending Rosewood Free School either have a statement of special educational needs/ Education health and Care Plan (EHC) or they attend on an assessment placement. The school population consists of pupils from a range of social, cultural and ethnic backgrounds.
The school has a needs led approach to education. Each child is assessed in five key skill areas, Communication, Cognitive Development, Environmental Control Technology, Physical Skills and Personal, Social and Emotional Wellbeing. Targets are set in each of these areas and are taught throughout the school day. A truly personalised approach to learning.
We are currently running a pilot project, in partnership with City College Southampton and supported by Southampton Local Authority to provide education for our learners who are aged 19-25. This is an exciting opportunity and provides the research and evidence for the school to make an application to become a Further Education provider in its own right. Watch this space
https://www.rosewoodfreeschool.org.uk/about/
Rosewood Free School is a day school for pupils aged 2-19 years with profound and multiple learning difficulties (PMLD). The school accepts pupils from Southampton and Hampshire. This includes a lively Post 16 provision “The Hub” which also caters for learners with severe and complex learning difficulties including additional physical and sensory impairments. Pupils attending Rosewood Free School either have a statement of special educational needs/ Education health and Care Plan (EHC) or they attend on an assessment placement. The school population consists of pupils from a range of social, cultural and ethnic backgrounds.
The school has a needs led approach to education. Each child is assessed in five key skill areas, Communication, Cognitive Development, Environmental Control Technology, Physical Skills and Personal, Social and Emotional Wellbeing. Targets are set in each of these areas and are taught throughout the school day. A truly personalised approach to learning.
We are currently running a pilot project, in partnership with City College Southampton and supported by Southampton Local Authority to provide education for our learners who are aged 19-25. This is an exciting opportunity and provides the research and evidence for the school to make an application to become a Further Education provider in its own right. Watch this space
https://www.rosewoodfreeschool.org.uk/about/
