April charity news – Haven House Children’s Hospice
“It gives us time to recharge our batteries”
Sarah Craigie, 39, from Essex explains how Haven House Children’s Hospice is making a difference to her family
My daughter Georgia, now 17, had a difficult start in life after she was delivered via an emergency caesarean 16 days over due. However, despite a traumatic birth, she appeared to be perfectly healthy and I was thrilled to take her home.
It wasn’t until Georgia was nine months old that I started to worry. She was my first child so I had no point of comparison, and the health visitor assured us she was just slow to develop, but I had noticed she was quite a floppy baby and wouldn’t sit up.
I took Georgia to the GP, who was also concerned and referred her to a paediatrician at Great Ormond Street Hospital. She then spent the following two years having various tests for different medical conditions – none of which came back positive.
At one point we were told she had cerebral palsy and wouldn’t live to two-and-a-half years old. They then called us back and said it wasn’t that, but they still didn’t know what it could be.
During this time Georgia was also diagnosed with epilepsy after having a seizure at home when she was 14 months old. These seizures soon became a nightly event, which was terrifying. But as the doctors were unable to give Georgia a diagnosis, we didn’t know where to turn in terms of support.
As Georgia got older we realised she would always be dependent on us for round-the-clock care. She’s classed as having global developmental delay – a general term to describe below-average intellectual functioning – and profound multiple learning disabilities. She is also doubly incontinent, has no speech and requires a wheelchair. She is fed through a tube and has developed severe scoliosis (a curvature of the spine), which is unfortunately inoperable and has led to her suffering reoccurring chest infections.
Although we have been told Georgia has progressive cerebellar atrophy, which means that part of her brain is deteriorating, we still haven’t been given a name for her condition and we don’t know what caused it.
In 2012 my wife Michelle, who is Georgia’s adoptive mother, and I spoke to a specialist Haven House nurse, who suggested we should use the respite services at the hospice.
Although I was nervous about the prospect of leaving Georgia with anyone else, I could
see straight away how amazing the hospice was. The grounds were beautiful, the staff were incredibly friendly and I could tell they cared about the children so much.
Georgia now stays at the hospice 20 nights a year, which has been really good for me and Michelle. It’s lovely to be able to recharge our batteries so we can be the best parents we can be.
Georgia has physiotherapy – which helps to keep things supple so she doesn’t stiffen up
– and they give her a bath and pamper her by painting her nails. She also does wheelchair Zumba – where she is raced up and down – and has one-to-one music therapy sessions, which she loves and really benefits from.
It’s amazing to watch the difference in her as the music therapy starts – she lights up with excited noises and smiles, which brings a tear to my eye. She also starts to get excited even as we drive into the grounds, which makes me so happy.
Haven House Children’s Hospice – THE FACTS
- Between 2014 and 2015, Haven House supported 329 children.
- It wants to grow its services to support 500 children per year across north and north-east London, west Essex and east Hertfordshire by 2020.
- A significant proportion of the care the hospice provides is respite; it is not predominantly about death and dying.
- Children’s hospices such as Haven House receive limited funding from the Government and rely almost entirely on donations.
- You can support their work by visiting havenhouse.org.uk
BIG GIVE UPDATE
Haven House Children’s Hospice raised £38,929 in The Candis Big Give. This will help to employ another Haven House nurse to provide expert medical care and quality of life services to young people between the ages of 0 to 19 who have life-limiting conditions.