Eight-year old Lara has experienced a lot for someone so young. Thanks to her positivity and her Roald Dahl nurse Anna, Lara and her family feel supported when dealing with her serious illness.
Lara is no ordinary eight-year-old. She has bundles of enthusiasm and a great sense of determination for life. When Lara was eleven-months old, she was diagnosed with Hemophagocytic Lymphohistiocytosis. This life-threatening condition is also known as HLH and causes the immune system to malfunction, damaging the body's organs. After receiving chemotherapy and a bone marrow transplant, Lara is now clear of HLH.
However, as she got older, it became clear that her bone growth was affected and her bones were not growing to an average length for her age. Her diagnosis is still unknown and is considered to be very rare. Lara is currently being cared for by the genetics team at Great Ormond Street Hospital for Children (GOSH), including Roald Dahl SWAN (Syndromes Without A Name) nurse Anna. Roald Dahl nurse Anna provides crucial support to Lara and her family by coordinating and attending appointments at the hospital. This helps the whole family make sense of the medical information they receive as Lara is under the care of 13 specialist teams, making visits overwhelming. Anna is a main point of contact and talks to the family about their concerns, providing specialist support.
Lara's Mum Sema believes Anna has had a huge impact on the family and says, "It makes a big difference to have Anna there to answer any questions and support us. Anna is always there for us, knowing that makes a huge difference to me. If I'm feeling down, I know she'll be there for me. It makes me feel happy, it's a good feeling that you can't explain."
Anna has been a Roald Dahl nurse since Spring 2016 and has helped Lara and family focus on the positives to get them through hard times. Lara is due to undergo surgery to help straighten her legs to help improve her ability to walk and though she has challenges ahead of her, with the help of her Roald Dahl nurse and lots of optimism, she knows she has the support of a specialist children's nurse to help provide the best possible healthcare for her.
There's no stopping Lara who in-spite of losing her hearing in one ear, has a passion for singing, which she hopes to take further in the future. She is now able to develop her strengths with Anna's support, rather than worrying about what she can't do.