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Isovaleric Acidemia

Congratulations Malik; you did it!  Malik graduated from Franklin High in Seattle his senior year 2017. 

School years weren’t always easy for me; I was in the hospital a lot when I was younger and had a couple of hospital stays during high school and many absentees because I was sick.  Every time I was absent or in the hospital I got behind and it was hard to catch up because I had to stay on top of my current classes. I found out in the last quarter of my senior year that I had 2 classes I was failing and I needed these credits to graduate  The teachers gave me the option of doing all the catch up on line.  I worked hard to finish and I did it; I graduated.

I am planning on attending community college this fall; I am going to start out with a couple classes to get used to it and then take more classes in the winter quarter.  I am interested in studying videography.  Its weird leaving high school but I hope I can find a job and study at the same time.

My diet is pretty restricted.  I have been off formula for a little over 2 years.  My protein intake is between 16 and 20 grams a day.  It’s hard to get it all in because I am really picky.  My mom and nana keep telling me I need to eat more vegetables and salad.  I do eat them when they make them but I don’t make them for myself.  I have to get better at that.  My main foods are french fries, hash browns, low-protein pastas, rice (low-protein rice and regular mixed) and fruits.  I have to remember to eat sometimes because food isn’t that important to me all the time.  I drink ½ cup of milk a day instead of formula.  I take L-carnitine (15 milligrams) and Vitamin D daily.

I used to think about my IVA a lot when I was younger and hate having it; and then having Sickle Cell too, it was just too much.  I remember going to PKU camp and the only one there with PKU was my counselor.   It was summer so everyone went swimming and I sat and watched because I can’t go into lakes because of the Sickle Cell.  Any time I have been in a cold lake; I have had a Sickle Cell crisis.  I didn’t like that camp at all.   As I got older, I didn’t think about it as much it didn’t bother me as much.

I started going to Sickle Cell camp when I was about 11 and went every year until I turned 18.  Everyone there has Sickle Cell so it was way better and I didn’t feel so out of place.  I have never told anyone at school about the IVA and thru my senior project on Sickle Cell, I did tell my class I had it.  People would ask me questions about my diet; “why I couldn’t eat meat” and why I went to the hospital, I just ignored them.  It’s just hard being different and to have two life-threatening diseases is hard.  My mom and nana keep telling me to tell people so they will understand.  My family and a couple friends know; maybe someday I won’t feel so secretive about it.

Mom’s Notes:
Malik was born and we thought he was a healthy baby boy until he stopped thriving at about 5 days old.  Washington State wasn’t screening for IVA at that time so his life didn’t begin on a very pleasant note.  He endured a coma and near death until he was finally diagnosed.  It has been a journey; we are fortunate to have a great medical team, family and friends that have supported us along the way.  Malik’s IVA was so chronic at the beginning that his diagnosis with Sickle Beta-Thalassemia (SCD) didn’t register until we finally realized how that would affect his life too.  My daughter (D’Anya) has Sickle Beta-Thalassemia as well so I glues all I’ve known as a mom is taking care of special needs children.  They are my blessings, my life and today they are both doing great.  I have to continue to teach them about self-care as they get older and it’s all gone by so fast that I have to remind myself that they are becoming young adults.

I think about how life would be if they didn’t have these genetic diseases and I find myself thinking that I want them healthy but I love them so much just the way they are.

Written by Peggy  (AKA: Nana)  All content is from a interview/discussion we all had.  I tried to represent their (Malik and Mom’s) words and thoughts as best I could.

From the 2017 Summer OAA Newsletter

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