My girls were diagnosed with albinism when Jemima was 2½ and Maisie 8 months of age. My husband and I had no family history of albinism and it came as such a shock, it was devastating. We went to a geneticist and they explained that albinism is like any other genetic condition and that my husband and I are both carriers of albinism gene so we have a 25% chance that our children will be born with albinism.
Albinism is a rare genetic condition affecting about 1000 Australians (1 in 17,000). It is inherited by a recessive gene that is passed from both parents and causes the body to be unable, or have limited ability to produce melanin which is responsible for the colouring in skin, hair and eyes. Because of their albinism the girls have a number of sensory challenges including, impaired vision, sensitivity to glare, gross motor skill development and fine motor skill development difficulties.
Both girls were diagnosed at the Women’s and Children’s Hospital, I knew I couldn’t help my children, they needed specialist support to be the best that they can, but where did I start? It was very frightening - would they go to normal school, and what kind of life were they going to have?
I remember picking up a brochure in the Ophthalmology department that day, it was a Can:Do 4Kids brochure and from then on our lives changed.
Once I rang Can:Do 4Kids I knew there was support out there for my family, for my girls. Two members of the Can:Do 4Kids team came and visited my family at my home shortly after that phone call, and they visited every week from then to provide early intervention and occupational therapy support for Jemima and Maisie.
Once the girls got a little older they started attending the Building Blocks group session at Can:Do 4Kids. This group was so beneficial; it was really great because that is when we started to meet a lot of other parents and other kids in similar situation to ours. The girls had never met anyone else with albinism until attending the Building Blocks group and they really didn’t know how they fit in. I have seen their confidence improve so much from attending the group sessions with Can:Do 4Kids it has been amazing seeing them achieve their goals.
“Maisie’s overall confidence has grown so much, she was a tenderly shy child and had limited social interaction with peers or adults. However now she is such a bubbly little girl eager to talk to her friends and teachers, therapists, adults and even keen to lead the way with activities! She would sing the loudest in group songs and always had a smile from ear to ear.” says Occupational Therapist, Adriana.
Now that Jemima is 7 and Maisie is 5, they both attend mainstream school. Jemima receives in school support from Occupational Therapist Adriana who works closely with her teacher to overcome challenges in the classroom such as handwriting and concentration. The girls love to sing, dance and cook – they are the best of friends. Maisie loves reading, Jemima not so much but with the support of Can:Do 4Kids I’m sure she will get there!
“Jemima and Maisie are two of the most eager children I have that come to therapy. When I arrive to see Jemima at school she is jumping up ready to go and independently gets her slope desk ready for the session. It is so great seeing them as they want to learn!” adds Adriana.
We still have many challenges to overcome and have recently started attending the new mealtime and feeding service and can’t wait to see the outcomes!
I want the girls to have the best life that they can have, I want them to be able to continue attending a main stream school, I want them to have lots of different friends - friends with albinism and friends without albinism so they can cope with the challenges they have ahead.
A diagnosis such as albanism is not the end of the world, when there are supports like Can:Do 4Kids. Children have so much potential that you need to help them to achieve and Can:Do 4Kids is that lifeline that has supported Jemima and Maisie to blossom now, and well into the future.
We can’t thank everyone enough for their support of Can:Do 4Kids and what they do for our family.
This Christmas please consider sending a gift to Can:Do 4Kids so children like Jemima and Maisie can look to the new year and beyond with confidence.