Tristan – Rare disease day every day
Tristan is 10 years old. He loves to be active. He loves to be outdoors – he plays cricket, dances, and learns Kung Fu. Indoors he loves to play computer games whilst chatting to his friends online.
Tristan’s love of being active means he has high enthusiasm and likes to lead. He is always complimented on his politeness; he is very thoughtful and inclusive of others.
Russell Silver Syndrome
Tristan’s #RareDisease is Russell Silver Syndrome and he receives excellent care at the UK’s first #RareDiseases centre for children at Birmingham Children’s Hospital and Charity The work of the centre is supported by the Roald Dahl’s Marvellous Children’s Charity and for those with #Undiagnosed conditions by SWAN UK (Syndromes Without A Name).
Rare Disease Day Every Day
For #RareDiseaseDay2021 he and his family share their story of life with a rare condition in the household. For them it is Rare Disease Day, every day.
Here we get an insight into how having a brother or sister with a rare condition can affect siblings. Tristan’s sister Bethan is 9 years old, and has to be adaptive all her life, and frequently has to take a back seat. There are many rewards to having a unique family and Bethan is growing into “one of the most compassionate, caring, patient and understanding people you’ll ever meet, but that doesn’t mean the journey to get there isn’t a hard one.”
Siblings will often find themselves as #YoungCarers and as such may require help and support themselves.
The Financial Burden
Tristan’s mum has become a full time carer so the family income has reduced.
In addition to a reduction in income, rare conditions often come with a higher cost of living. From frequent trips to hospitals and specialist clinics, often far afield (Tristan makes regular visits from Cambridgeshire to Birmingham Children’s Hospital’s specialist Rare Diseases Centre), and specialist services and equipment which are not always wholly or even partially funded by Health or Social Care services, to the more day to day costs for specific diets or specialist clothing (eg to accommodate tubes and stomas) or orthotic footwear.
Tristan’s early life was a frightening time for the whole family. Tristan’s early life was a frightening time for the whole family as he experienced traumatic, often painful, medical procedures. His care lacked the mental health support he needed to treat him as a ‘whole child’.
To this day Tristan experiences anxiety and sleepless nights which leave him vulnerable to the everyday demands placed on him, particularly in education. Unexpected things can trigger fear and spur him to run to a place of safety. It takes an especially sensitive and thoughtful teacher and school to make the adjustments that he needs to feel safe and understood and be able to show just how bright and creative a student he is.
Tristan and his family are members of CamRARE’s Unique Feet group supporting children with rare diseases and their families.