HFI - QUESTION

[irene]

My 3 year old daughter has hfi, my husband and I don't, nor does anyone else in my family or husbands family that we are aware of. Is anyone else is the same situation, can it go back generations?

Anyone's comments would be muc appreciated.

Thanks

[julienc]

This is very common. HFI is a recessive genetic condition. A person has to have both of the genetic markers (one from each parent) in order to actually have HFI. If a parent is only a carrier, then there is a 50% chance of passing the recessive gene onto their child. (The parent either passes on the "good" gene or the "HFI" gene, so to speak.) Therefore, if BOTH parents are carriers, there is a one-in-four shot at the child actually receiving both recessive genes and having HFI.

The odds are mind blowing. It is extremely unusually for someone to even be a carrier, let alone pro-creating with another person who is a carrier, and then a 25% chance of a child having HFI.

People who are carriers do not exhibit any symptoms at all of HFI, so it is very normal for families to go on for generations, passing around recessive genes without ever knowing a thing until BAM, someone happens to end up with both recessive genes and then has HFI.

We have no record of anyone in our family history of ever having this condition. And then whammo, both my brother and I have it. Again, the statistics are just insane if you sit and think about it. Especially for us to both have it. (We are the only siblings.)

I ran through all these numbers with my geneticist when we were discussing testing my baby for HFI. She said it is very common to not have any family history of HFI (due to the recessive nature of the condition), but she did say it often crops up in siblings. This board is a good example of that. There are at least three of us here with siblings who also have HFI.

[colormist]

What Julie said.

I also have a brother who has HFI. No other instances of it in my family that we are aware of. Of course, grandparents (great-great-great grandparents even) could have had it and not realized it.

[meaniejean]

Irene,

As Julie and Colormist have stated, it is unusual to have family members with HFI. We are not yet diagnosed, but it seems that me, my brother (I have 9 siblings so chances are I would at least have one siblings with HFI) and my two sons are possibly HFI. My mother's mother passed away due to unexplained liver failure in her late thirties I believe, so it is possible she may have had it. My husband and I have a similar family ancestry so I think that might possibly explain our kids.

[Tammy]

Again, like the rest, Regina has HFI and there is no known HFI anywhere in either family. But then again, once you go back too far, how many people died with no known reason?

[charlie]

We are the same, no history in family as far as aware, but would agree with Tammy, how many were undetected.

My partner ran out on me when I was pregnant so I blame him for contaminating my genes, what is the chance of bumping into some lowlife that has the same faulty gene as you!!? Statistics please

[irene]

Thanks for all your replies. Sometimes I just feel that when told my daughter had HFI I was quite upset about it, but had to accept it, and was glad she was diagnosed so young, another part of me doesnt want to accept it, maybe its just me and the maternal instinct wanting your child to be the same as every other child, Hannah started nursery in January and so far has not felt excluded, the teachers have done well with her snack food and have a list of whats allowed and not, I just don't want her to feel excluded. I think I probably get more upset :'(than her about it, at the moment she is really good and knows what to eat and what not, but she seems to think that when she gets bigger she can have fruit etc. I think I am probably feeling this way because she has just started nursery and it won't be long before she goes to school, I know, it won't be until next year, but I just think how will she cope. Sorry for ranting on, well to finish on a brighter note I have a gorgeous bright thriving and energetic 3 year old.

[julienc]

Irene,

I'm sure your feelings are completely normal. My mom had a similar reaction when I was diagnosed at the age of 30! She kept saying "How could this be?" "We have no family history of this!". It was amusing.

Hannah will do great. It's wonderful that she has a diagnosis - that would have helped me tremendously growing up. She will learn quickly about her diet (and it sounds like she has already adapted significantly). It will just become a part of her. You're doing everything right!

[charlie]

don't worry Irene, you aren't alone in these feelings, I still get tearful or down when I look at foods she can't have but I'm really careful not to relay this to her, I try to be positive to her about it and she doesn't seem to mind the restricted diet so far, as long as she has her bowl of spaghetti she is quite happy.
Her school is great too and don't make a big deal of it. They have a copy of her diet and if they ever do cooking they check ingredients with me. They have a school policy of no one allowed to share food as they all have home packed lunches.

We did have our first hiccup the other day, she has never tried food she isn't allowed if told, but she had some sweets in her party bag after a party which she handed to me as usual, I put them on the seat of the car and drove to the stables, whilst I was chatting to someone she was playing in the car and decided to try the sweets, she nibbled each sweet. I didn't find out till she suddenly told me the next morning, at least it explains the manic behaviour the night before. she said she wanted to know what they tasted like. I just quietly explained to her why she musn't do that but I will just have to watch her a bit more carefully for a while. After all, she is only 6!!!