Coping with two small children can be challenging for any family but when James Hopkins was born 25 years ago, parents Vance and Heather had their lives turned upside down.
James, who was born at Gloucestershire Royal Hospital in September 1987, was diagnosed with rare neuro-muscular disease myotubular myopathy, which hampers muscle development, resulting in an inability to swallow and he could not sit up or walk.
"He was very floppy and was not able to sit up. He spent four months in a special care unit," said Mr Hopkins. "It took Heather and I a few weeks to learn how to feed up him through a naso-gastric tube. He needed regular suctioning of his throat to stop him choking. It was not a shock to us but the diagnosis was a problem given to us and we had to deal with it. It was a 24-hour regime to care for James."
At the time, the couple also had their daughter Sophie, three, to care for.
In 1980, Heather became pregnant with baby Richard who was born six weeks early. He stopped breathing on his second day and never recovered. He died two-and-a-half weeks later.
Two years later, Heather fell pregnant again with Matthew who was sadly stillborn. The post-mortem gave no explanation as to what had happened to cause the two deaths.
Vance, a former engineer at Xerox, said: "James was a very happy and bubbly little boy and when he turned one, he started saying a few words. Heather did a lot of physiotherapy with him. He did attend hospital a few times to give us respite care and Heather was able to have a physical break.
"Unfortunately we believe he picked up an infection on one of the visits and sadly died at just 20 months old, in May 1989."
However, James' death was not in vain. The couple's incredible journey began when in September 1989 the James Hopkins Trust was born. Today the trust, which is based in Barnwood, provides overnight respite care for two children on Fridays as well as respite care in the family home and at their day centre.
"It all started with a jumble sale which my aunty actually organised. From this we raised £300. The aim was to provide respite care to families with disabled children. The only respite care we could get was when the hospital looked after him. With the money raised we hired nurses to go out to the family home," said Vance.
The very first child to receive care in their home from the trust was James Tingle from Gloucester. Over a year the trust focused their attention on children with severe disabilities including Rett Syndrome, brain injury or severe spastic quadriplegia cerebral palsy.
Vance, who lives in Mitcheldean, added: "If there was something like this around when James was born, I think he would have lived longer. When the trust first started there were only four or five of us on the committee and we ran it from Malcolm Nelmes' office in Turley, who was chairman for the trust. He previously worked for another charity.
"We would often hire nurses from the British Nursing Association in Cheltenham. As it progressed we got more and more support from people."
In 1995, the trust moved to Jordan's Brook House in North Upton Lane where it was based until 2002. Vance and Heather then took a massive step and decided to build their very own base on a site next door. Once the build was complete, the couple named it Kite's Corner, which symbolises a child's freedom and their spirit to fly freely, which is also illustrated in the trust's logo.
The two-storey building is home to the committee, volunteers and their own bank of registered nurses. It has two bedrooms which provide overnight care for two children on a Friday evening. It also has a nursery for daytime respite care, a multi-sensory garden and hosts holiday clubs. The nursery was judged 'outstanding' by Ofsted in 2011. The trust continues to provide respite care for sick children in their own homes too.
Vance said: "We always had a vision that we wanted to provide respite care but we did things in stages and when funds allowed us too. The trust has always listened to parents, they identify needs and we try to raise the money to fulfil their needs."
In 2012, Vance and Heather launched a vision for the future of their charity – an ambitious appeal to improve the overnight service for families.
The aim was to raise £500,000 in a bid to extend Kite's Corner so they could build extra bedrooms.
At the moment there is a 16-week waiting list for parents. However, the extra bedrooms will provide care for eight children a week.
Last year there was not a dry eye in the room as volunteers, supporters, nurses, families and children gathered to celebrate the trust's 25th birthday and the start of the building project. The trust successfully reached its target to raise £500,000. Vance and Heather's aim was to raise the money and start the build on the trust's milestone birthday. The extension will be complete in spring this year.
Although the year was a joyous one, the family was also hit by some devastating news. In January last year, Heather, 61, was diagnosed with metastatic breast disease which spread to the spine. After a routine blood test in September, it was initially thought that Vance had cancer of the oesophagus. Fortunately, further biopsies proved this was not the case.
Vance, 61, has now decided to retire from the trust. He said: "Although there is no cure for Heather's illness, it is manageable and she is learning to live with it. Heather has the potential for a reasonably long lifespan. It has made us seriously think about the future. We want to spend our retirement together; we have plans, places we would like to visit, things we want to do while we can. Now that all these pieces of the jigsaw are in place at the trust, we feel like it is the ideal time to step back and allow someone else to take the helm.
"Heather and I would like to say a very big thank you to all the staff, committee members, volunteers, businesses, community groups and individuals who have contributed to and supported us over the last 25 years. Without their help, the James Hopkins Trust wouldn't be where it is today."
The couple plan to tour Scotland and go on their dream holiday to the Maldives later this year. They will also be back at Kite's Corner for the grand opening of the new build.
Vance is also keen to take up photography again and to enjoy his painting set which was a present from Sophie. Vance will be handing over the reins to assistant manager Joanne Page, who joined the trust 10 years ago, along with head of fundraising Sarah James, who joined in August last year.
Joanne said: "I'm not sure I can put into words and do justice to describe Vance and Heather's dedication to the trust and the hundreds of families they have supported over the last 25 years. It is simply phenomenal and their shoes are impossible to even contemplate filling.
"Prior to joining the trust, I had enjoyed a long and successful career in financial services, but after losing my first son Matthew from an extremely rare condition, I decided to take time out to allow me to come to terms with my loss and therefore took a year's career break. It was in fact Heather and Vance who played the greatest role in helping me come to terms with my own personal grief."
Sarah added: "From when I first entered Kites Corner as a scared and exhausted Mum, I knew I was somewhere special, I was welcomed with open arms and made to feel safe and supported. Vance and Heather were upstairs working and initially I wasn't aware of who they were. That is indicative of how unassuming and modest they were and still are.
"I still am in awe of what Vance and Heather have achieved and will be forever indebted to them for helping my family to learn to enjoy and treasure our new normal of living with a child with complex nursing needs. We cherished our time with Ollie who was severely disabled, who died in 2011.
"I found it hard to express my gratitude to Vance for what he had done for us as a family, the only way I could think to show him how much he meant to Ollie and us was to ask him to be a pall bearer at Ollie's funeral. Vance did this without question and we will be forever grateful that Vance and Heather were part of Ollie's full circle of life."
