Siblings

[S.Rishi Kumar]

Hi . I have a brother who is 2 years younger than me . He is normal till now . But I am totally freaking out because I have been hearing almost everywhere that siblings too have FA . He is my primary support in all aspects of my life . My parents decided not to take a test for him . If anything happens in future I hope he takes it as good as I did . I couldn’t even imagine a situation like that .

[Matt Lafleur]

That is a scary situation man. But at least he has you, who knows what it’s like. How is your brother doing now?

[Deleted User]

I have 4 stepsister but one of them is 16 and lives with my parents and I. She’s helpful at times but she’s just so damn lazy. I still love her though!

[Ersley Johnson]

I find this to be a very interesting and powerful post. I have no children due to the fact i’m terrified of ever passing on FA to my child or children. I couldn’t bear to watch my child die the way my mother, her sister, and a few of my uncles did. Just recently, I’ve gotten back with a girlfriend I use to date 20 years ago, and my heart sank when she brought up the subject of children, of how she remembered my fear and that she was totally ok of never having children.
I couldn’t have loved her more in that moment. I do praise those with FA that want and do have children and who do not have my fear of this disease, I really do.

[Matt Lafleur]

Ersley, if you don’t mind me asking, did your mother, her sister, and a few of your uncles all have FA? In my family, both my sister and I have it, but no else has had it that anyone can remember.

[Ersley Johnson]

Hi Matthew. My mother’s family was very big. All of which came from Honduras. Most of them had FA and died from it.
I have two Uncles who never got the disease. One of which my Uncle Jesse has a large family and none of his children
never got FA. I have no brothers or sisters and grew up with my three cousins and my Uncle Cisco who raised us together after my mother and her sister died. Of us kids, two of us, my cousin Myrthis & I showed no signs of the disease. But Greg started showing signs as early as 15. We use to laugh at him tripping on the stairs at that age, chalking it up to simple clumsiness, but we truly had no clue it was far more dire than we could comprehend. By his late 20’s, just like my mother, he started really to show all the signs, and soon afterwards passed. 5 years after that, my other cousin Edwin started showing, then soon passed. My cousin Myrthis had three kids and they are all grown up and have shown no symptoms, which i’m so happy for them. Edwin had two kids, one of which is fine, but his sister just started showing symptoms of unequalibrium and is now terrified as she knows nothing of the disease. I was deeply saddened for her, and soon took to the internet to see if there were any new findings or treatments for FA.

[Matt Lafleur]

Sounds like you have faced a lot in your life. I am glad that you found this forum, so we can go down this path with you.

[Ersley Johnson]

Thanks Matthew. It was rough seeing my mother die at only 10 years of age. I’m really hoping Stem Cell treatments will become common place and help tons of people afflicted with this disease.

[Catherine Vasquez Ortiz]

Good Afternoon Everyone! The topic on Siblings. I have two older brothers with FA I as well have it. What I don’t understand is that we three have FA but they don’t have a C Shape Spine as I do. Can siblings have the same thing but with different symptoms?

[Matt Lafleur]

Yes absolutely! My first FA symptom was flat feet, and hers was high arches in her feet. So even though we are siblings FA symptoms are really random for everyone with FA!

[Felicia]

Hi i have 2 brothers and 5 sisters and 2 of my sisters have FA. None of my parents have it our anyone else in our family that we know off. My sister Lourdes is 39 years old and she was the first to learn she had FA. Because after she had her fist daughter at 20 her symptoms started and she started going to the doctors to see what was wrong a year later they still didn’t know and she got pregnant with her second daughter. After she gave birth 6 months later they finally diagnosed her with FA. They told her that both of our parents have the gene but not the disease that 1in 4 of there children could have FA. So all 7 sibling got tested and only I and my 38 year’s old sister Natividad have it. I don’t know if the doctors where right but they told us that unless we have children with someone that doesn’t have the gene our kids won’t have FA, is that wrong? Please let me know. My 40 years old sister have a 18 years old and a 17 and up to now they don’t show any signs of FA. My 38 year’s old sister have a 13 years old daughter and she doesn’t show any signs either. My son is 12 and he doesn’t show any signs. Please let me know if we weren’t informed right.

[Matt Lafleur]

Felicia, here’s how I understand i. I could be wrong I’m no scientist.

Think of FA as blue eyes. There are only two eye-color genes- brown and blue. Brown is dominant; blue is recessive. So when you are born, you get one gene from each parent. The brown-eyed is stronger, soif you get one brown-eyed gene, you end up with brown eyes. Blue eyes is weaker, so only if you end up with a blue-eyed gene from both parents do you have blue eyes. (Green and hazel eyes are mutations of brown and blue.)

FA is like a blue-eyed gene. It’s recessive, so you only have FA symptoms if you get two FA genes. So any kids from an FAer needs to have a partner with one FA gene to have a child with FA. Does that make sense?

[Felicia]

Yes thats my understanding too thats why when my husband and I decided to have a baby he tested himself. Thanks just wanted to know if i had it wright

[David]

I have 4 siblings (3 sisters and 1 brother) and 3 of us (me, 1 sister and my brother) have FA.

Both are older than me (11 yrs and 15 yrs). We all had quite late onset, with no symptoms until we were each in our 20s.

It was, and still is, scary to see their progression.

[Matt Lafleur]

Very cary. But hang in there man! Remember we are here if you or your siblings need.