Soft.org Facebook Soft.org Twitter Soft.org Instagram
Soft.org Facebook Soft.org Twitter Soft.org Instagram
SUPPORT DONATE

Telephone: 07731651970:

enquiries@soft.org.uk

Our Family Stories

Jonathon



14th March 1998 – 29th July 2007
 
Jonathon was born to Christine and David Rose on 14th March 1998.  He was not breathing and was taken straight to special care. They were soon told he could die within days; every cell in his body had an extra chromosome – a condition called Trisomy 18.

Jonathon didn’t die though, he came home, on 8th April.  Over the next few months, he slowly hit those developmental milestones; the first look, the first smile.  He had a catalogue of unusual issues; clenched hands, clicking hips, hernia, jaundice, low ears, narrow breathing tubes and his heart was on the wrong side of his chest.  His paediatrician loved to ask young doctors to listen to Johnathon’s heart.  The unlucky doctor would place the stethoscope on the left side of Jonathon’s chest – and panic!
 
In later life he developed a curved spine, partial complex epilepsy and his feet became so deformed he had two toes amputated. Dental treatment required a general anaesthetic and his whole life he was sensitive to light and heat.

Yet none of these problems affected him even one hundredth as much as the thing that made his first six months so unbearable: colic. Simple, constant, everyday colic. He would cry until he fell asleep and then he would wake for the whole cycle to repeat itself again. We slept in shifts and did what we could but in truth there was nothing we could do except hold him.
 
 Mercifully after six months he gradually cried less and less. 
He was often unwell in his first eighteen months, being admitted to
hospital six times. In 1989 he was very poorly, lost lots of weight and suffered apnoea attacks, which were terrifying as they are a leading cause of death for Trisomy 18 children. But by the end of August there was a remarkable transformation and for the first time Christine was able to write on his ‘wee and poo’ chart, ‘happy and content’. The bad times were over and the good times rolled.
 
For the twelve years that Jonathon, or as we named him, ‘The Pooh Master’ lived with us, family life was in equal measure exhausting, comical and rewarding. We have so many memories, some of them happy, some sad and some that bring a smile and a tear to your eye at the same time. 
On one occasion, Christine was pushing Johnathon in his pram and walking beside her was a young Katie.  ‘Is Jonathon going to die’ she asked. ‘Yes’ replied Christine. ‘Jonathon is going to die but we don’t know when. It could be tomorrow, next week or next year.  We will have to wait and see’. They walked on, Katie internalising everything she was learning about her baby brother…’Mummy?’    ‘Yes’……’When Jonathon is in heaven…. He will still be able to play football won’t he?’

And it was Katie who, at 12 or 13 years old, came straight home from school to meet her brother from the school bus, wheel him in, untie the knots that were his shoelaces, give him a drink and change his nappy.

The saddest thing about Jonathon was also the greatest blessing.  He formed no emotional attachments to people.  He knew the people he liked, but he liked them only as much as a favourite toy – because they made him feel good.  Thankfully that made the whole area of respite care so much easier to deal with.

Jonathon spent his respite time at two places. The first is Norman Laud Centre, which is a fantastic place.  The second was the home of our shared care lady, Freda Preston, who would take him singing round ASDA and let him chuckle at the cinema.  Twice with Freda, Jonathon competed in the Sutton Fun Run.  She treated him as part of her own family.  To us she is a star.
 
 hen Jonathan was very young it was us, his parents, who needed respite. Later, it was Jonathon who needed a break from us. When he was 10 years old, three successive review panels decided that the best plae for him to live was Marta House in Hereford. Social Services would not provide funding and we were prepared to let Jonathon take them to court.  As a result, enlightened social workers pushed for Birmingham to open their own unit for profoundly disabled children.  Two years later, in 2000, Jonathon moved into his new home at Edgewood Road in Hawkesley, Birmingham.  It was called, rather bizarrely, Unit 101.

Apart form the name, it was as near perfect as you can imagine. The reason? It is because so many of the staff show real love towards the children.  On the day Jonathon passed away, three staff from Edgewood Road went to Good Hope Hospital, paid their respects and sat with him a while.  It was at Edgewood Road that Jonathon sent the happiest years of his life.

Jonathon also enjoyed his school days.  He attended the Bridge School in Erdington and Victoria Road in Northfield. The education and care that he received in both places was exemplary. We cannot speak too highly of the staff who show real affection towards their pupils and we will particularly treasure the photographs and folders from the sixth form Round Table class in Victoria Road.
 
At the age of 18 Jonathon should have moved from Edgewood Road because he now came under the care of adult services. For children as profoundly disabled as Jonathan was, this was complete nonsense. It would be so much better if young adults like Jonathon could live in a family cluster for their entire lives – after all their needs change very little and their lives are short.  They are taken away from carers who have come to know them well, to start all over again.

In every cloud there is a silver lining and the home we found for Jonathon was located in Grange Road in Erdington, only ten minutes away.  The people were lovely and we were certain he was going to be happy.  We would be able to see him more frequently.  Jonathon moved into his new home on 20th July 2007.

Alas it was not to be. In his new home and without warning, on Sunday 29th July Jonathan’s condition rapidly deteriorated.  He rolled his head to one side and stopped breathing.
 
============================================================================================

People who spent time with Jonathon could not fail to hear him sing at full volume, at any time of the day or night and especially when they were watching the news.  So it will be no surprise to you to learn that the Mr Man sign on Jonathon’s door was always Mr Noisy.
People who knew Jonathon had a little extra love placed in their hearts.

Jonathon loved to feel free, to lie on his back on the carpet and spin around giggling at the ceiling.  He loved to float on his back in the swimming pool. He loved the freedom of being pushed in a wheelchair and being driven through the city at night so he could gaze at the street lights.  He would chuckle away, rocking from side to side and clapping his hands with glee.  For a few ears he loved walking around in his walker looking like Robocop.

There is no doubt about it, for most of his life Jonathon felt food.  In face he was outrageously happy.  He laughed every day, usually for no apparent reason and has a smile that could light up a room.  He never got tired of being tickled, of being thrown about, of having lots of people moving around him.  He loved bright lights, laugher, discos, music, Drayton Manor and spent many happy hours playing with his favourite activity centre.  He like dis dinners kept warm and a pudding with custard or yoghurt and he especially liked to be allowed to nod off. He would have got a gold medal for sleeping and a silver medal for singing at four in the morning. He also liked you to whisper in his ear – when you did, he would go quiet and still and when you stopped, he would pull your head back and want you to start again.

================================================================================
 
So many families have faced a diagnosis of Trisomy 18, but now there is someone to run to; a helpline, a website, a charity or support group.  In 1988 there was nothing. In those first difficult months, Christine had contact with a charity called ‘In Touch’, which then asked her if she would consider joining up with another mum, Jenny Robbins, to co-found a support organisation for Trisomy families.  Jenny’s daughter Beth had Trisomy 13. In June 1990, SOFT UK was born.
 

==============================================================================================
‘You’ve gotta have love in your heart
You’ve gotta have a song on your lips
You’ve gotta let freedom roll
Then you’ll feel good’                                                           
 
(The Supremes and the Four Tops)


Created: 22/01/2019 15:54

Back to family-stories

Registered Charity: 1002918 (England and Wales) SC043341 (Scotland). Copyright © 2005 – 2017 SOFT UK. All rights reserved.