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Support the superheroes! Undiagnosed Children’s Day Friday 27 April

Undiagnosed Children’s Day, Friday 27 April, celebrates the bravery of children with undiagnosed genetic conditions. 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that is likely to remain undiagnosed.

Imagine if in the last 12 months you have had 73 blood tests, 52 nights in hospital, 49 outpatient appointments, 12 x-rays, 4 ultrasounds, 3 MRIs scans, 63 days of IV, 5 days in critical care, 4 blood transfusions, 3 anaesthetics and one major surgery. Despite all this, your condition is still undiagnosed. That’s the reality for many of these children. Their bravery makes them superheroes.

Without a diagnosis families can struggle to access the right support and have no idea with the future holds for their child. Will they walk? Will they talk? What is their life expectancy? How will it affect future children?

SWAN UK member Samantha Hargrave says: ‘Living with an undiagnosed child is one of the biggest tests we have gone through as a family. We are unable to make firm plans as everything can change in seconds. The local paramedics now come in and make themselves at home and we are on first name terms with the majority of the children’s ward staff.

‘Ava Rose is three years old and we have spent a lot of time in different hospitals and seeing different doctors for her. This can get extremely confusing as many doctors have different opinions. Some days you don’t know what her medical plan entails. As parents we can pass on information but essentially the clinician will require the information from the previous clinician and when the child is being seen by multiple clinicians in multiple places this can take time and things can get missed, which in turn can cause distress for the families and delays in getting answers for the child.’

Lauren Roberts, the National Coordinator of SWAN UK says: ‘Having a child with an undiagnosed child is extremely difficult for families as they have no idea what the future holds and can struggle to access basic information and support.  For the undiagnosed child, and their siblings, life can become a monotonous routine of appointments, tests and (often painful) medical Ellaprocedures.  They often miss out on the activities we would usually associate with childhood. Undiagnosed Children’s Day is a chance to celebrate them for their bravery and raise much needed funds so we can help put back some fun into their lives.’

Tree of Hope support many children with rare and undiagnsoed conditions from all over the UK to fundraise for the specialist treatment, equipment and therapy that may otherwise be available to them via the UK healthcare system. This includes Ella. Ella and her family came to Tree of Hope in 2017 to raise £12,000 for an ‘Innowalk’. An Innowalk is a “specialist piece of equipment that enables Ella to stand unassisted, help develop her legs, strengthen her bones and increase her body’s load-bearing capacity, as well as help other issues such as improving respiration and aiding her gastrointestinal function and helps stregthen her muscles. Most importantly its great fun!” says Sue, Ella’s mother.

SWAN UK (syndromes without a name) is the organiser of Undiagnosed Children’s Day, and the only dedicated support network in the UK for families of children and young adults with undiagnosed genetic conditions. SWAN UK runs free whole family events, give access to 24/7 support and put families in touch with each other so they feel less alone. If you have a child with a syndrome without a name, get in touch and see how they can help you. SWAN UK is run by the charity Genetic Alliance UK.

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