Very sad mother of a young boy

[Mimi31500]

Hello everybody

I am new here. I am a carrier ALD female, I am 32 years old and I have a son, Jan, he is 4 years old and he is a carrier ALD too

I live in the south of France so, please, excuse my very bad English, I do my best to be understandable.

Since I knew this diagnosis I feel very sad and guilty for my son, because it is my fault, I passed the wrong gene to him. Before I was pregnant I did not know I was a carrier of ALD.

Monday 9th of décembre we did a IRM ( cerebral picture) to my son. Today He has nothing (Thank you God). This week we will go to Paris, at the Kremlin Bicetre Hospital in order to see a specialist of ALD, the Doctor Sevin. I hope I will hear good news about a possible gene therapy in the future.

The disease started with my own mother, she was born on 1967. The first symptoms were a deterioration of left eye 's sight, so the doctors thought my mother had a multiple sclerosis.At this moment my mother had 35 years old.

Unfortunately it put the real diagnosis behind...

Now my mother is 52 years old and she can not walk without a crutch. We knew the name of my mother's disease in 2016: Adrénoleucodystrophie liée à l'x ( in french)

Please can you describe me your feelings about the potential disease or disease of your Children.

I read David Cry's book "a little walk to home" ( I am not sure of the title, sorry) where he describes his feelings of Dad confronted to the disease of his son.

Did you know interesting books about this subject?

I feel very alone...

I wish you all the best

Myriam

[AussieBob]

Yes send me an email [e-mail] please Bob Wyborn

[COwithAMN Administrator AMN EASIER Volunteer]

Bonjour Myriam

Thank you for getting in touch.

We know a lot about the problems that parents have in caring for children affected by ALD.

Have you visited healthunlocked.com/leukodys... ?

Alex has been running for more than 10 years and started with a specific focus on supporting parents with ALD children. Their website is alextlc.org/

Please get in touch with them if you haven't done yet.

I will send you a message on chat with some more details.

With every good wish

Chris

[Mimi31500 in reply to COwithAMN]

Thank you very much Chris for this informations.

I knew yet this site but i didnt read all informations...

It is a very interesting website and I will get in touch with them.

I wish you a very nice day

Myriam

[tieaknot]

Myriam,

My name is Amy...another female here, and I only have a minute to write right now, but I want you to know that you are not alone. I don’t know if you are also on Facebook but there are also groups specifically for females with ALD and parents of kids with ALD. Support and friendship for this journey is priceless. Sending you a hug.

[Mimi31500 in reply to tieaknot]

Thank you very much Amy for your answer.

I will see on Facebook if I can find a group.

Sending you a hug too.

[tieaknot in reply to Mimi31500]

Feel free to send me a private message and I can give you some groups to look up too.

[MWCarrier in reply to tieaknot]

Can you also let me know what Facebook groups you suggest! Also a carrier with a son who has the gene

[easygoin1]

Hello Myriam,

I am a 53 year old man and have AMN. I am glad to hear that your son's MRI is clear! I know it is hard to not feel guilty and responsible, but you did not know. Before my mother passed I overheard her say to her cousin that she felt guilty that she had given my 1 brother and I this illness and her cousin's response to her was "without you they wouldn't have had life" and that has always stood out to me as a very strong statement and, I hope, gave my mother some reassurance that she didn't need to feel guilty. I would give you the same response to feeling guilty "without you he wouldn't have had life"

I pray for the best for you and for your son!

Be well and have a great day!!

Jeff

[Peteraf]

Hello Myriam,

I have 2 sons with ALD, diagnosed at 6 and 8yrs, 12 years ago. If you want to chat privately via email my address is [e-mail].

best wishes

Peter

[Hillary]

Hi Myriam, I to am a carrier of ALD. Short family history is my grandfather had AMN, meaning my mother as his only daughter was a carrier. My brother died in 1954 from Schilders disease, only found at post mortem. I was born in 1956 and knew non of this until my son was diagnosed at age 6. I was diagnosed shortly after this and I am now a manifesting carrier like your mum.

You are not alone, and never blame yourself for passing on the gene of this awful disease, you gave him,life, celebrate that. I know this is easily said but it is true, without you he would not live. We are all here for you to talk to whenever you feel down. Follow the link to Alextlc.org The site is run by a mum with lots of experience and will be a great help.

Best wishes, never forget you are not alone xx

[MWCarrier]

I am also a symptomatic carrier with a son who also has the disease. Feel free to message me [e-mail]