Suzanne is the youngest of three with two sisters; Shelby 16 and Abigail 13.
Suzanne’s mum Susan had a normal pregnancy and birth with Suzanne and only started noticing something was wrong when Suzanne was about 3 months old when she started to have seizures.
Suzanne was diagnosed with Lissencephaly Type 1 which is a rare brain condition, she also suffers with epilepsy causing her to have daily seizures and she has a floppy airway meaning she needs to be suctioned regularly throughout the day and night. Suzanne cannot take any food, drink or medication by mouth so has a gastrostomy fitted enabling her to be fed via a tube straight into her stomach.
Despite her condition meaning that she cannot walk, eat, sit up or live the lives of her sisters she is a very happy girl who loves spending time with her family and going to school.
Suzanne was two years old when she was referred, along with her family, to Children’s Hospice South West. At the time the nearest hospice for the family to visit for a respite stay was Little Bridge House in Barnstaple where they made regular trips as a family.
Reflecting on their referral to Little Bridge House Mum Susan said
When you hear the words ‘children’s hospice’ you just think ‘ow god no’ but actually our first visit was really lovely and we have looked forward to our stays ever since.
Mum Susan is Suzanne’s main carer, with no additional care at home, visiting the hospice is Susan and Dad Mark’s only break. Suzanne requires monitoring day and night meaning that Susan never gets a full night’s sleep, sometimes sleeping on a blow-up mattress next to Suzanne’s bed. Suzanne attends a local school for a few hours each day, however Susan often receives calls from the school if Suzanne isn’t well meaning that Susan’s time to herself is minimal.
In 2011 Little Harbour children’s hospice in St Austell was built and opened its doors and Suzanne and her family were offered to transfer their respite stays to Little Harbour, more than halving their travel time.
Talking about Little Harbour Susan said “As soon as we walk in the door a weight is lifted, we all look forward to our visits and cannot wait for the next time we get to stay. It is the only time I get a full night’s sleep. The care team are fantastic, they know Suzanne so well and I fully trust them with her.
We are truly grateful to Little Harbour for our stays, it really does mean so much to us.
“Last year was one of the worst years, we were in and out of hospital a lot and ended up in Critical Care twice which was really scary. You just don’t think it’s going to be you and when the doctors are telling you all the things that could happen is really does bring it home to you and reminds you of the situation you are in.”
Suzanne’s two sisters Shelby and Abigail adore their sister, feeding her, helping with suctioning and also helping when she has seizures.
“They cope really well, it’s hard on them with Suzanne being in hospital a lot its worrying and the knock-on effect is that I’m not at home with them either” Susan explains. “We are just really honest with the girls, when Suzanne isn’t well we tell them everything and they are amazing.”
On their stays at Little Harbour Shelby and Abigail have a lot of fun but are also provided with a lot of support from the dedicated Sibling Support Team. They have made friends with other siblings and families that stay at the hospice, now often booking their stays at the same time as them.
Looking ahead to the Rainbow Run Susan said “Suzanne absolutely loves rainbows, she always has, her bedroom is decorated with them, there are rainbow cushions, rugs, bibs, pillows, everything! So being part of the Rainbow Run is really lovely and very fitting.
It is such a brilliant fundraiser for a great cause and we had a lot of fun last year, it rained but it just did not dampen people’s spirits. It was so lovely to see and meet so many supporters of the hospice who were there raising money to help families like ours. We are truly thankful and we are already looking forward to being there again this year.”