Dear Amelia and Tom

Dear Amelia and Tom,

I am sorry.

I am so incredibly sorry.

Amelia you are 14 and Tom you are 11.

Both of you are dealing with conditions that are genetic and created by your daddy and I.

You are dealing with everything different in your lives because of your daddy and I.

Our genes created both of you and all of your differences and difficulties.

We did not know though.

I so, so promise, with all my heart we did not know.

Tom, you have to deal with such limited sugar and carbohydrate intake.
Measured food and limited choices for you, my amazing boy.

You are woken up at all hours of the night and are forced to eat and drink while half asleep to get your BSL to a safe level.

Discussions 4 times a day (including daily calls from school) about insulin doses based on exercise etc.


Amelia's A-T gene disposition could have been compared to a whole MCG full of people..... and just your daddy and I had the A-T gene.
We were soul mates when we met and made you.

A beautiful, teenage loved up couple.

One in 4 chance of creating an A-T child.......
and we did it.

YAY!  us.......

NOT.

We lost your mobility slowly, after creating it.

We are losing your speech, after creating it.

We are losing your brain after creating it.

Now Amelia's lungs are failing her slowly.....thanks to our genes.

We always new it was terminal, BUT this is scary.

Lungs = breathing = staying alive.

I do not know what happens next.

I am so, so, so sorry.

We just did not know.

Creating people so inspiring and amazing and yet making them suffer everyday due to genetic disposition.....

We are just so sorry.

We just did not know.

But...................................

IF we did know and IF we did know the typed facts........

We would have possibly stopped the birth.
You would never have been here.

I would have looked at me personally and thought that I was not the type of person to mother such children.

(I honestly say this sobbing while trying to find the keys on the keyboard)

BUT then I would never have been introduced to this kind of life.

A life of finding positives and happiness around every corner.

Thank you Amelia and Tom for showing us where to look for inspiration.

We know now to just look at both of you for courage in moving forward.

Our future may be scary, but you both seem to be leading the way.......

While daddy and I follow the path.

xxx