The arrival of a new baby in the family is a joyful occasion, but when parents find their child has albinism, this can prompt many questions and even concerns. Children with albinism are visually impaired and very sensitive to the sun meaning they need extra care.
While the birth of a new baby is an occasion to celebrate, parents of children born with albinism often find that support for children with this rare genetic condition is hard to access. To mark International Albinism Awareness Day* on June 13th, the Albinism Fellowship has stepped in with a new Baby Box scheme. This is available for all families who have a child with albinism who is under a year old and who become paid up members of the charity for the sum of £20 per year. The charity has obtained grant funding for this project and the items in the baby box .
As the only charity in the UK and Republic of Ireland for people with albinism, we have around 40 years’ experience in helping mums and dads of young children with albinism.
From the 13th June, mums and dads will receive an Albinism Fellowship baby box as part of their membership. This contains items to help parents meet the specific needs of their young child; sunglasses, a factor 50 SPF sun protection hat, sun cream samples, a high contrast book and sensory toy as well as the Fellowship's Understanding Albinism booklet. Roselle Potts, Chair of the Albinism Fellowship expresses, “The baby box is an exciting new initiative which we are sure will be welcomed by new parents of children with albinism. When we chose which items to include in our baby box we looked at the most common queries raised by new parents. They often ask us questions about how to protect children from the sun and how to best stimulate their babies’ sight, as children with albinism live with high degrees of visual impairment.”
Rachel Whyte, received the first baby box for her son ( pictured with his book and glasses)
The baby box from the Albinism Fellowship was a gratefully received addition to the support they have already given my family. Having something in my hands meant I could use the helpful advice without having to worry about sourcing the right items. It gave me ideas of the right creams and hats to use and my son loved the easy grip brightly coloured balls. Thank you so much, we love it!
About International Albinism Awareness Day*
International Albinism Awareness Day is marked every year on June 13th to celebrate the human rights of people with albinism around the world. It is marked with specific events in various countries, social media activity and campaigns. The United Nations General Assembly proclaimed June 13th as this specific day with a resolution it adopted in 2014.
About the Albinism Fellowship
For more information about the Albinism Fellowship, which provides help and support to children, their parents and adults with albinism in the UK and Republic of Ireland and information about the Albinism Fellowship Baby Box Scheme, or for interview and photo requests.
Rare Revolution Editor