Tracy lives with her daughter Summer, 11, who has a rare condition called syringomyelia. We spoke to Tracy about her daughter’s condition and the current cost of living crisis and the effects it is having upon them. “Syringomyelia means not every day is the same. Summer can have numb hands, weakness in the legs and a band-type pain going around her legs as well. It can affect her face. Her lips swell up, and if she cries, it burns her face. It can give her excruciating pain.”
Summer was diagnosed when she was 8 years old and is now in the care of the hospital. Tracy explained that her diagnosis was a battle as her symptoms started suddenly during the pandemic in 2020. “Summer woke up one morning paralysed down one side of her body. So obviously it was terrifying. It was so hard to get in touch with the GP. We finally got an appointment via Zoom from the GP.”
Talking about Summer’s diagnosis, Tracy explained that most of the knowledge about the condition has come from her own research. “When she was first diagnosed, all we had was a piece of paper with a name on it and then we were sent on our way. I found out that it was a rare condition from my own research. As a mum, you just have to cope.”
Summer’s health has raised issues for the family despite Summer not wanting to accept her condition.
“Walking to and from school has a massive impact. It’s about a mile away, so she walks and then does some exercise in school and then has to walk home, she ends up in bed because her legs just feel weak. As she doesn’t have a learning disability, she isn’t entitled to help such as school transport. We get no help from the school. She's academically above her age, and they don't see her disability. They don't see how it affects her because she masks all her pain. She will mask a lot of things. There's just nothing out there for her other than Same but Different and the Rare Navigator service, which is amazing.” There is a Facebook group too that Tracy has found but there isn’t anything local or UK based.
The future for Tracy and her family is unknown “It scares me. We don't know how it’s going to affect her later in life, is she going to be in a wheelchair or not, we just don't know yet. We just try and take it bit by bit and step by step.”
On top of the worry about her daughter and raising her children the cost of living is adding extra stress and worry. “It's been quite significant because Summer has a specific diet, she has become allergic to some foods, so we must accommodate for what she will eat, which is not cheap.”
“Just help with everyday things that my daughter needs. It would be a lot better if things that were available for people with disabilities were more accessible and less costly. It would help so much.”
Finding that financial help isn’t geared towards families with rare diseases, Tracy struggles with getting the right support or suitable. Most help isn’t appropriate for her or her family. Places like warm hubs that were set up were inadequate and of little use to the family. “Warm hubs won't make any difference because there's no transportation to get her there because of the cost of living.”
“Taxi fares are going up bus fares have gone up. It's just not helpful for my family. I've not been told that there is any help for transport.”
The rising cost of transport is a huge issue. Transport to and from numerous medical appointments at the hospital is needed due to Summer’s mobility. This all adds to the financial strain on the family. Tracy doesn’t work and had a limited income for the family. She would love to have a job and an increase in income but due to her commitment as a single mum, with a child with a rare condition, it’s not workable.
“I'm not suitable to go to work. It's because I am a parent carer to my daughter, and her needs are greater than people of her age. I wish I could work so I can provide the essential things for my daughter, that anybody would.”
On top of being a carer, Tracy would need so much flexibility for the numerous appointments that Summer has to attend. Work, as much as Tracy would love to, just isn’t a viable option at the moment.
The standard of living is hard, mental health is also an aspect of the cost-of-living crisis for the family. “I can't take my daughter places, because again, it's costly, due to her needing extra support, and with her mobility, so we just can't afford to take her anywhere. Going out places on day trips, and going to Chester Zoo, for instance, we would need a wheelchair for her, and again, that costs extra, but is essential for her to get around properly. So ultimately, it is very frustrating. Because you can't do what normal people can do. And that has an impact on your child's mental health, as well as your own as well.”
The cost-of-living crisis is putting extra strain on Tracy and her family, and they are excluded from doing things that they see others do, such as fun days out. “It is beyond frustrating. Every day can be a struggle because we fight and we face it alone.” The struggle drains Tracy, “I'm exhausted after fighting.” Tracy will continue to fight to get what she needs to provide Summer and her son with a future and life.
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Syringomyelia
Syringomyelia is a condition characterized by a fluid-filled cavity or cyst known as a syrinx that forms within the spinal cord. Syringomyelia is a chronic condition and a syrinx can expand over time compressing or destroying the surrounding nerve tissue. A wide variety of symptoms can potentially be associated with syringomyelia depending upon the size and exact location of the syrinx.
To learn more about syringomyelia, click here.
Source: https://rarediseases.org