Hi Kimberley and Lucy

[Guest guest]

Hi Kimberley and Lucy, Thanks for telling me about your families.

It's lovely to speak to others who understand how you feel.

I got a diagnosis soon after birth for Abbie. I was monitored

through my pregnancy because Abbie was tiny and they did the

genetics tests when she was born because they thought it might have

been caused by a genetic problem. In the end they decided it was

because I had bad pre-eclampsia but Abbie isn't catching up!

Thanks for your information about Moorlands Lucy. I'm sorry Holly's

surgery had to be postponed. Abbies surgeon said they would leave

the first operation until she was 3 or 4. Abbie has an appointment

in August so I think I will check what experience her surgeon has

but I'm going to ask to be referred to Moorlands. We live in

Nottinghamshire but i don't mind how far if it's the best care.

I've also decided to go back to her geneticist. I have a general

paediatrician but I don't feel like anyone really is co-ordinating

which specialists she should see. I suppose that's because BPES is

rare so they are not used to managing it. Also, I'm so glad you

told me about McKenzie, Kimberley - she sounds like a lovely baby!

It's good to know that other parents whose kids have needs other

than the eye symptoms of BPES are here too.

Do you both have pictures of McKenzie and Holly on here? I'd love to

see them and I hope you'll keep posting how they are getting on.

Thanks again for making me feel so welcome, Leah