Xena is six years old and lives in Northampton with her paternal aunt and special guardian mother Elizabeth, her special guardian father, and her older cousin who she sees as a brother.
Elizabeth says: “Xena has Hereditary Spastic Paraplegia which is very similar to cerebral palsy and is often mistaken for it.
“Xena’s mobility is limited and she relies on a cane to get around. She also uses an ankle-foot orthotic and a standing frame at school, which helps her posture. She manoeuvres around with walking sticks and holds onto things in the house when walking about.
“There’s not much information on the condition online. They seem to be still doing a lot of research into treatments which means that we are unsure what the future will look like or if any operations will be needed. Xena is a very strong, determined, and bubbly girl. She tends to get a lot of attention and interactions when we are out and about because of her condition. She is also a bit of a daredevil and cheekier than her brother.
“I decided to stop working to provide better support for the children and offer them everything they need. Xena also has various appointments, so we have to arrange ourselves around them. Most of the days are spent in school, but when we have free time we enjoy outdoor activities and swimming. Taking her into our family when she was seven days old has completed our family unit as we all look after each other.
“Because of her age, I believe people are still quite considerate towards her. However, as she gets older, I worry that people with disabilities don’t get as much positive attention.”
“I want to make sure that she’s aware of herself and as independent as possible… well integrated into the world and not isolated. I wish certain areas were more accessible to her mobility needs, as some places we go she just can’t be included.”
Help with a specialist tricycle
“Through the support of Family Fund, we were able to purchase a specialist tricycle for Xena, a little big for her at the moment since her legs don’t fully extend yet. However, we can push her around and she has fun that way. Once she grows a little, she will be able to use it independently, which will be wonderful.
“With her limited mobility, Xena can’t walk for long distances. The grant allows us to spend more time outside being active. She can now do fun activities that other children her age do so she won’t feel left out.”
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