Child's name: Heidi
Support Coordinator's name: Carmel
Location: Yorkshire and Humberside
Heidi is a bright and inquisitive 11-year old who loves baking, being creative and fond of reading. Heidi first went to the doctors as she had severe onset headache but was diagnosed as having a severe migraine, she had previously reported changes to eyesight so her parents booked an opticians appointment, it was when her coordination was affected that her parents rang 999. On arrival at hospital she was treated for potential meningitis before suffering seizures and a bleed on the brain was found. After being transferred to a specialised neuro ward in Leeds the AVM was found. It was here, whilst making a cup of tea, that her mum picked up our contact card and called the Regional Coordinator who was able to meet the family, the following day, on the ward.
Heidi had been diagnosed with a large wedged shaped AVM which is inoperable due to size and location and is being fed by main artery. Her case was due to be discussed at a Consultant’s conference within the coming week. Mum was feeling overwhelmed, with two other young children at home, her employment and Heidi’s educational needs being at the forefront of her mind.
Having explained the range of support available from the Child Brain Injury Trust, we referred the family to Nestor for a full benefits review, ensuring that they were accessing all their entitlements. We then liaised between the hospital teaching service and Heidi’s school to plan for a phased return.
After a very brief stay in hospital, Heidi returned home and is managing a partial return to school whilst awaiting treatment.
Heidi astounded everyone with her resilience, however it was her younger sibling Bella who was struggling with her emotions and reacting negatively, taking things out on her siblings, particularly her younger sibling. We arranged a sibling support session for Bella, in school and took along a range of resources to help her understand her sister’s ABI but more importantly to give her the space to ask questions and talk about how she felt. The My Buddy resource was very well received.
Alongside this, I encouraged the family to apply for a Give a Child A Chance Grant so that Heidi could attend a cookery course and pursue her love of baking, something that she hadn’t been able to do in recent months.
We also signposted the family to the Little Brains Trust for more specific advice about the treatment pathway that was being proposed.
We completed a DLA application for Heidi including a supporting letter. This was composed following a family visit and her parents reported that this propose helped them to better understand their daughter’s symptoms and to find the words to discuss it with other people, family members, friends and teachers.
Heidi will now access gamma knife surgery at Sheffield Children’s hospital and we will continue to offer support and advice as the family need it.
Heidi also accesses The Artworks for support through art which has also been very therapeutic.