Suivez un sujet de discussion à la fois
another brother or sister for our son???
Voir: Traductions (FR) Langue originale-
1234 | Family issues | il y a 2 mois | Rédigé à l'origine en anglais another brother or sister for our son???Hello,
I'm from Belgium.Our 6 year old son has alkaptonuria. We would like to give him and his sister (no AKU) another brother or sister. Is this something we can do?????? Or is this disease so bad that we can't choose for another child if there is a chance that he/she will get AKU as well?? This is so difficult because I have no idea what this disease really means. I don't feel it myself...
Are there members of this community who also have brothers/sisters with AKU. How do they feel?I would like to hear what you feel about this. Do we have the right to choose for another child? Perhaps this question is answered the best by other AKU patients?
I hope my English is well enough...Thanks!
-
robpleticha il y a 2 mois | Rédigé à l'origine en anglaisHi,
I'm Rob from EURORDIS. I am confident you can find someone here to offer their experience. In the meantime, I wanted to make sure that you knew you could post in French, Italian, Spanish, or German.Not just English.
No matter what language you write in, other members can have your post translated into their native language. The translating is done by a human translating company.
I will try to track down Jean Luc.
Best from Paris,
Rob -
1234 il y a 2 mois | Rédigé à l'origine en anglaisThank you for your response! (Dutch isn't available, so I will continue in English...)
I wanted to post this question on the site, because AKU patients feel what it's like to have AKU and if it is wise to choose for another child. Is it a 'risk' that we can take? The opinion of patients is very important to me, because they know this disease the best.
Thanks to all! -
OliverTimmis il y a 2 mois | Rédigé à l'origine en anglais
Hi,
I'm not a patient either, but work for the AKU Society in the UK. I cannot make the decision whether to have a child for you, but I can tell you the chances of having another child with AKU is less than having a child without AKU. The disease is inherited by a recessive gene - this means that a child must receive 2 AKU genes to have the disease. Statistically, each child you have has a 1 in 4 (25%) chance of having AKU. However we do know of families where every child has unfortunately inherited AKU.In the UK, parents of a child with a genetic disease can be referred to a Genetic Counsellor (a specialist doctor) who can better explain your choices. I don't know the situation in Belgium, but it may be a good idea to discuss having another child with your GP.
If you want to know any more, send me another message, Oliver
-
1234 il y a 2 mois | Rédigé à l'origine en anglais
Hi,
Several years we have been told that this disease "isn't so bad". He cannot have much protein (20g). That's all we have been told. He LOVES to play football (plays now for 2 years!). And he's allways 'helping' his father (bricklayer). He's extremely energetic... I never saw difficulties in that... But now everything changes...
There is a big difference between not playing football and being in a wheelchair... (very black-white conclusion...)
Choosing for another baby with a 1 in 4 chance of having AKU?
I would certainly take the chance if I know that AKU patients can be happy people who can get married, can go to work, can have children... so can enjoy life.Then a 1 in 4 chance is not so bad.
But I wouldn't take the chance if it is a life full of struggle, pain, sorrow, sadness,... I can't make my baby go trough this... Then a 1 in 4 chance is to much!I'm sorry if this looks strange, I try to explain my feelings as good as I can in a different language.
This is so difficult because I can't feel what AKU means... Only AKU patients can tell that..So difficult!
*** not that people who don't marry or have children can't be happy! But I would like him to have the choice...
-