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The youngest of three kids, Nora, five, seemed to be a perfectly healthy baby, developing well and even reaching some of her milestones early. Then one afternoon she woke from her afternoon nap and had lost movement in her legs.
In a matter of days, the family’s world came crashing down when doctors found a fist-size tumor in her chest crushing her spinal cord.
Nora was diagnosed with the rare early childhood cancer called neuroblastoma.
Nora started treatment straight away and hospital became their second home. Naomi said amid all the pain, their little girl’s fighting spirit shone through.
Mum Naomi was caring for Nora 24/7 with a lot of time at hospital, while dad Hannes reduced his working hours. It was a struggle as the family felt torn in half.
The one bright light during Nora’s long and grueling time in hospital was discovering Captain Starlight and the Starlight Express Room.
Affectionately dubbed the Ginger Ninja, Nora is so happy doing the normal kid stuff she missed out on like ballet, swimming in the ocean and jumping in the pool. Why asked what she enjoys, Nora said “The outdoors, playing outside. I like everything, I like flowers, deer, music, dancing, pink and orange, sparkle dresses, puppies painting, arts and crafts….. I just love everything”
While Nora has finished treatment for now, she still needs to be in hospital for regular check-ups and tests.
Eamon, as well as his brother Kaelan, was born profoundly deaf. This was traumatic and heartbreaking for his parents, but they managed to “fix” their deafness through cochlear implants. Then, in 2018 (when the boys were 5 and 3 respectively), they had genetic testing done and were told that the little boys have Ushers Syndrome type 1D. This means that they are born deaf and will gradually lose their eyesight due to Retinitis Pigmentosa.
As an infant, Eamon had delayed developmental milestones and balance issues which we know now are linked to Ushers Syndrome. He only sat at around 9 months old and walked unaided at 18 months. He still battles with his balance and this is made worse by his deteriorating eyesight. In a normal classroom environment, he tires faster than his peers because he really must concentrate to hear in a noisy environment. He does, however, always put 110% into whatever he does, he never gives up, and has a quirky personality that makes everyone fond of him.
As a family, the Doaks prefer to concentrate on Eamon’s abilities instead of his disabilities. Eamon really wants to be a pilot, so they supported this by taking him to flight simulator sessions. Eamon himself does not consider himself any different to other kids in his class and lives his life to the full.