Joseph's parents say EACH's support has been invaluable
The parents of a child with cerebral palsy say the support offered by EACH is invaluable, and that Suffolk will benefit from a new hospice.
"Joseph is coming up to four and can't feed himself, do any of the personal care for himself," said Helen Rea. "It is just like having a baby.
"It's so nice when the hospice says we can have day care. He'll go off for the day and you can just relax."
East Anglia's Children's Hospices need to raise £3m for a new building.
Helen and Paul Rea, from Ipswich, were aware of EACH before their son Joseph was born in 2006.
Paul ran the London Marathon for the charity in 2002, but Helen says that "never in a million years thought we would have the need to use them ourselves".
"It was a healthy pregnancy," said Helen. "You don't think about foetal distress or the damage it does to the baby - how it starves all the organs.
"It starved his brain. You don't realise that the actual birth is the riskiest time for the baby.
"He needed oxygen straight away and they reckon he was within a minute of dying.
"If he hadn't of been resuscitated first time he would have died."
Joseph was placed in special care and Paul and Helen were told the following morning that he'd suffered fits overnight and his body was shutting down organ by organ.
"He was on a ventilator for three days and pulled out the tube himself - which was a great sign that he was getting better," said Helen.
But within two weeks an MRSI scan revealed that Joseph had suffered diffuse brain damage.
"It was the end of the world to us," said Paul.
"You go into hospital as parents to be, you don't expect to come out as carers," said Helen.
Lack of support
Paul and Helen say information and support were hard to come by.
"When you have a child with special needs, support and resources are a best kept secret and you only find out about them by word of mouth of other parents," said Helen.
Work on the new hospice began in April 2010
"It's almost like a subculture," said Paul "A set of organisations and processes, procedures - it's a nightmare."
EACH offers care for Joseph at its converted bungalow in east Ipswich, which they're hoping to replace with a purpose-built facility.
The respite offered to parents is equally appreciated.
"Joseph can't feed himself, tell you how he's feeling, and he doesn't sleep very well either," said Helen.
"It's not like a normal child where you can say 'go play with your toys', because he can't play and he's not aware of danger. He has to be supervised all the time, it's very draining."
"He suffers from tremendous mood swings because of the damage to different parts of his brain," said Paul. "He can be perfectly happy one minute, the next minute he could be banging his head or being quite extreme."
Joseph requires the help of his parents 'three or four times a night' and has regularly been rushed off to hospital.
This invariably has an impact on his sister Megan.
"Megan was spending a lot of time in hospital with us," said Helen. "Jo tends to fit at two in the morning, everyone has to go to the hospital and she still had to go to school at 9 o'clock.
"None of her friends could really understand, because they're not in that position."
EACH has helped by providing a siblings group which gives children an opportunity to relate to people in a similar position. "It's really helped her," said Helen.
A mums' night is also a hit with Helen, who welcomes the opportunity to have a meal cooked for her and to talk about "normal things".
"It's a privilege to get their support," said Paul. "It's something you look at and think, 'we don't deserve this, why should they be so nice to you and give so much support?' But that's what they're there for."
This support will increase with the new Treehouse hospice, as will opportunities for children to benefit from a dedicated music room.
"The music therapy is brilliant," said Helen. "It's incredible, for a child who can't express themselves very well, how they can express themselves through music.
"Music stimulates the whole brain and that's very good for Jo, creating new pathways."
When BBC Suffolk's Lesley Dolphin spoke to Helen and Paul she asked if they ever regretted the decision to resuscitate Joseph when he was a newborn.
"No," said Helen. "I think Joseph came to us for a reason. We met some very special people along the way, who we wouldn't have met."
"Jo gives a million times more than we put in," said Paul. "It's just unconditional.
"Even with all the problems you get on with it - it almost elevates you above the mundane life.
"At work if people are throwing their toys out of their pram you just think 'this is so trivial, there are more important things in life'.
"I think it enriches you when you come in contact with kids who are disabled.
"They force you to look at yourself and look at all the things that you think of on a day to day basis which are trivial.
"You look at these kids and they struggle, everything is so much more difficult, but they achieve things."
BBC Suffolk is helping East Anglia's Children's Hospices raise the £3m needed to build a new children's hospice in Ipswich.
To give money, please send a cheque made payable to "EACH Treehouse Appeal" to:
EACH Treehouse Appeal, Epsilon House, West Road, Ipswich, IP3 9FJ
The appeal donation line number is 01473 276116.
Donate online at
EACH Treehouse Appeal