hi, new here!!

[hanna-hughes]

Hi everyone. I've just joined and wanted to introduce myself. My names hanna, I'm 23 and live on the isle of man (UK). Im married with 2 beautiful sons, Harvey who's 4, and Leo who is 11weeka. I also have a step daughter, Emma, who is 5.
Harvey was diagnosed with tuberous sclerosis complex and epilepsy when he was 3 weeks old. He spent months and months in hospital and at 5 months he was diagnosed with west syndrome. The tsc has made non cancerous tumours grow on the brain, in the heart and in his kidneys.
At 8 months he was diagnosed with wolff parkinson white syndrome (heart condition) and aince then has had problems with eating, vision, seizure control and a hole host of other issues. He was diagnoses with phenotype lennox gastaut syndrome a year ago.
He was starting to develop and looked like he would learn to walk independantly and started talking . He had swine flu last Xmas and since then he has deteriorted so badly he can't hold his head up most days and is in his wheelchair or bed all the time. He is constantly getting pneumonia or chest infections and the doctors have told us if its not eilepsy it will be his chest that will end his life. He has a very short life expectancy because of all these issues and is now oxygen dependant and peg fed as can't swallow. It's getting so hard and news people to talk to who know what its like which is why I have joined the site. I look forward to speaking to u all soon x x x

[Cint]

Hi Hanna and welcome to CWE,

You have quite a heavy load and you've come to the right place for support. I myself have epilepsy, so I don't know how you do it. There are other mothers here that will be able to offer advice.

Many {{hugs}} to you.

[Endless]

Hello, Hanna,

First of all, welcome to the forum!

I'm sorry your son has been going through all that. It is heartbreaking. There are a few parents in here whose children have a few of the same issues, and I'm hoping they will chime in.

In the meantime, we are here for you. It is a supportive, caring group who seems to help carry each other through.

[Paorrin]

Welcome, my daughter was diagnosised with lissencephaly/sub cortical heteratropia at 2 yrs old then developed Lennox-Gastaut Syndrome @4yo it has been hard but when we were diagnosised they told us that these kids dont live much past 2-3yrs of age. Well she is now 11 some days better than others. Put still the love of our lifes. The future is unknown but treat today as a present. I wish well and you are in our hearts.
Robert father of Abigail 11 Lennox-Gastaut Syndrome, SBH

[Nakamova]

Hi hanna-hughes, welcome to CWE!

I hope you feel free to post and explore the forums here (including "The Nursery").

Best,
Nakamova

[Ruth]

Hi Hanna, you will get a lot of support here. Welcome to CwE.

CWE was started by Bernard, out of love, for his wife Stacy. That love permeates throughout the whole forum.

You are going through some rough times.

My parent were told that I was going to die when I was 7 years old.
My husband was told at 3 different times that I was going to die and to prepare for my funeral.

I am still here.

HUGS