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Eleanor (Ellie)

Ellie was born on February 6, 2021. The first thing I remember the doctors telling us during her birth was how she had “amazing blonde hair!” She was born with a full head of white blonde hair and because my husband and I are very fair we didn’t think anything of it. We took her home and we were so in love with our new baby girl.

She had a bit of a rough start with us. She was allergic to her formula, and we didn’t know for the first couple months which left us with a very uncomfortable, colicky baby. She also had serious silent acid reflux which was causing her to aspirate into her lungs.

She was diagnosed with Tracheomalacia which caused her to have some scary breathing spells. Luckily, through working with a respiratory specialist at the hospital we were able to clear her lungs and she is supposed to outgrow the tracheomalacia. It’s a lot better now, but she still scares us with breathing attacks every once in awhile! She also has a heart murmur but we have not been able to see the specialist for that yet as the waitlist is very long. We are hoping it is something minor that doesn’t need a lot of correction.

We started to notice that there was something different about Ellie around the two month mark. She was not making eye contact with me, didn’t socially smile, and hated when we took her outside. She didn’t really ever look at you. It felt like she looked through you or past you. We also noticed that her eyes seemed to cross a lot whenever she was focusing on something like her play gym. I was becoming concerned about her vision and booked an appointment with her pediatrician.

When I brought my concerns up with him we talked about the possibility that she might have albinism. At this point we knew very little about this condition but he told us with her coloring and her eye problems that it was extremely likely that our very fair little Ellie was born with albinism. This was confirmed at her ophthalmologist appointment two months later. While we are still waiting for genetic testing we are fairly confident that with her fair coloring and white hair that Ellie has Oculocutaneous Albinism Type 1 which means that in addition to her eyes, her body and hair are also affected and she doesn’t create any melanin pigment on her own.

Because our bodies need pigment to see properly, people with albinism always have vision problems that are not correctable with glasses. We will not know the extent of Ellie’s sight deficit until she is older, but she will probably be legally blind as she grows.

Ellie also has photophobia which means that bright lights and sunlight can really hurt her eyes. We wear sunglasses outside at all times, spend time in sunshades and really enjoy the shade. Her body lacks the pigment to tan so she is very susceptible to sunburns and she has a much higher Tosh of getting skin cancers. Because of this, we are very careful in the sun, and make use of long layers, lots of sunscreen and bamboo clothing.

We have learned a lot about Ellie and albinism in the last six months. She has taught us so much. She is resilient and determined and just a happy little girl. She meets milestones in her own time and has been learning to do things in her own way.

Children with albinism grow up doing most things sighted children can do, they just may have to do things differently. Ellie will be able to do anything she can put her mind too and we will be there helping her along every step of the way!

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