Give1Save1-Asia: Special Needs Focus: Albinism

Before you read the interview, head over and check out the giveaway that our family this week has. Is this not the cutest doll in the world? Go check it out https://wewaitinhope.wordpress.com/2013/06/04/baby-be-blessed-doll-giveaway/

The longer I am back the more I feel like life is finding it's new normal. I am thrilled to get back into the special needs interviews and focus on some of these specific needs. This week I'm going to focus on Albinism. My good friend Emmy is the mom that I interviewed! Please remember that we are not medical professionals. The women interviewed are simply moms sharing their experience with us. Always, always talk things over with a medical professional before making a decision!

Albinism is a term to used to describe a condition in which a persons body does not make the correct amount of melanin (which is what colors the skin). That's the most basic definition.

Special Needs Interview

Albinism

What country did you adopt from? China Waiting Children
What was the age of your child at the time of the adoption? She turned 27 months on Gotcha Day

What made you consider this special need? I was born with a special need myself and when I learned of the possibility of programs placing children with special needs I never looked back. Albinism in particular wasn’t on my yes list but my maybe list and when I had the file of our sweet little with albinism, I researched it extensively and learned that it was actually a need that was quite easy!

What does daily life look like for you now? It’s basically the same as it was before we brought her home just with more kiddos! We’ve had a few more medical appointments in the beginning, but really in the long run, it will only be two more a year than usual! Some extra sunblock, sunhats and glasses! That’s it.

How has it impacted your life? Hugely of course because we brought a new child into our home. We have been so blessed by the gift of a third child and she is fitting in unbelievably! I would say in no way has her need impacted our family. We couldn’t be happier with the results from the doctors so far.
Are there variations of the condition and what are you dealing with in your child? I am not a doctor, but have picked up on lots of info to share.

Albinism has three major (minor in my opinion) areas of concern…

1^st: Vision is probably the most variable and unknown ahead time. Within the vision part of this need, there are many factors that can affect vision. I am not a doctor, so please do your own research as medicine frequently changes and advances.

-Nystagmus – This is where the eyes dart back and forth. Our daughter has this and it’s pretty minor unless she is stressed and tired. I have seen some people with albinism learn to control this on their own; there is also a surgery that can help people with more severe cases of it.

-Astigmatism – This is hard to explain, but has to do with where the eye takes the light coming in and focuses it. Our daughters are severe and this will not usually go away with age like it can for non-albinism people. It can be mostly corrected with glasses.

-Strambismus – Misplacement of eye (lazy eye) our daughter doesn’t have this, but it is my understanding that there is treatment for this condition.

-Photophobia – Light Sensitivity. Our daughter has this and her is pretty severe. Sunglasses, Sunhats and low lighting help. This doesn’t go away either and I believe all people with albinism suffer from some form of this

-Low vision – While somewhat correctable, glasses do not usually correct their vision enough to help them see clear. Though I was recently told that their vision could improve over time somewhat.

I know all of that sounded scary, but really she is just a regular kid that is squinty in bright light that I have to remember to grab sunglasses for when we go outside. We are in the process of getting her prescription glasses filled and will get the double dipped transition lenses and then we won’t even have to remember sunglasses! Without the glasses she needs to get close to things to see them… other than that she is just like any other child! I don’t even notice she’s different from my typical seeing kiddos. I find that I parent her not much different than my seeing kids. She can still read my facial expressions and hear tone in my voice…. Oh and her eyes are NOT red. They are blue with a hint of violet in certain lighting. Dare I say she has the eye color most people dream of having! Photographing her can be tough because of squinting and flashes are a huge no-no for light sensitive kiddo’s!

2^nd is skin

I read a bunch on this and saw many differences in opinions on many different topics. I’ve seen both parental differences and medical staff differences…. This is what we do. Not saying it’s right for every person with this condition but works for us. Sunblock is applied when going outside. We do not avoid the outdoors during sunlight hours, but properly equip her eyes and skin to do whatever it is we want to do. We do try to buy clothing with sun protection (summer especially.) From what I can tell about the cancer concern is they are more likely to get cancer if they get burned, so be sure they don’t! Hats are important in the summer to protect their scalp… and sunscreen even in the hair/scalp.. Apply often.. More than usual but don’t go over the top and buy 90SPF.. Their fair skin can be sensitive and going overboard with chemicals is not the answer. It’s proven that anything over 30SPF isn’t more effective than 30 and doesn’t last longer. All it does is put more chemicals on their skin than needed IMO.

3^rd is Syndromes… When I did the research for Daisy I was told because of her heart condition, she was more likely to have a syndrome than the average person with albinism. The major two syndromes associated with albinism are rare! I’ll provide some links for researching more on this need.

How does insurance coverage work for this condition and the adoption? As long as you add them within the allotted time (check with your state) I don’t believe it’s an issue. I would make sure your medical insurance covers vision.. other than that, I can't think of anything.
What expenses should a family be aware of upfront? Adoption costs and glasses. Also, sunblock can be very costly, especially if you decide on using more natural sunblocks because of sensitive skin.

What state are you in and does it offer additional coverage to this particular special need? I live in Minnesota, which is nice because the U of M has an albinism clinic. Also there are support groups and IEP services for Low Vision in our area. Plus a school for the blind about 30 minutes south of us if her vision was worse.
What else would you like others to know about this condition? This condition is life long (meaning there is no cure) but it’s really the special need that other parents of children with albinism consider the non special need need!

Here are some helpful links:

Links:

http://www.youtube.com/watch?v=RrqdFKs2Hzw (video showing how a typical person with albinism sees.)

http://www.albinism.org/ (A great organization supporting people and parents of people with albinism)

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002450/ ( medical description)

http://www.youtube.com/watch?v=Vz3Io9AdvYA (A look at adopting a child with albinism)

https://www.ammado.com/nonprofit/110807/videos/3905 (A look at adopting a child with albinism)

http://www.adoptspecialneeds.org/success-stories/kramer-kids-albanism/ (Interview of a family with LWB that adopted a child with albinism)

Waiting Kids with Albinism

email me at: hookedonfaith05@gmail.com for contacts for more information about these specific children

Felix DOB: 2009

Look at that grin!!!