I know I'm new but... (Long, sry)

[ZannahRain]

I desperately need a rant/self pity party. My daughter was diagnosed in June '10, after 5 months of no answers at all, with Leigh's Disease (Subacute necrotizing encephalomyoelopathy). It's a rare mitochondrial disorder that basically kills off her brain cells. For her this causes developmental delays and regression, seizures, failure to thrive, dystonia, aspiration resulting in a gtube being placed, and lactic acidosis. The last one is what will most likely be the cause of respiratory failure. The disease is terminal; the best that can be done is to try to slow it down. There is no clue as to how long we have with her, it may be a week, it may be 3 more years; it could happen slowly as she is hooked up to monitors and machines in the hospital, or it could be in the middle of the night.

Amaya wasn't always like this. We had no idea that there was anything wrong at all up until 22 months. She was walking, she was talking (a slight speech delay, but I figured as the youngest in a house of 10, she just didn't feel the need to talk), she was laughing, she was beating up on her big brother. Until February 25, 2010. Amaya went into a massive clonic-tonic seizure that ended up lasting over 3 hours and required that she be sedated. They didn't end up figuring out a cause and sent us home with her on antiseizure meds after 6 weeks. Once home she began to regress. She stopped talking. Had a hard time walking. Even stopped smiling.

In June they told us that when they compared an MRI done on her original trip in Feb and another done at the beginning of June, they knew her diagnosis. Even I, with my not-very-medical-eye, could tell the significant loss of brain mass between the two. Since then, we've been in therapy a lot; not to try to help her gain skills, but to try to keep the ones she still has for as long as possible.

That's where I'm having a rough time today. I miss her smile, most of all. She had such a gorgeous, radiant smile; but we haven't seen her smile or laugh in over a year. I miss her saying mama. I never thought I would beg just to hear my name. I miss her dancing. She used to LOVE music, if so much as someones cell phone went off, she would start dancing. A lot of people find strength in their faith... and I have honestly tried to build mine up... but it seems like every time I go to pray the only think I can ever think is, "Please don't take my baby away."

I'm sorry. I must seem like a nut. I usually handle everything very well... It's just that every couple of months or so, it's like I lose all strength and just break down.

 

[15.11.10]

all i can say is im so sorry you are going through this, iv come across a few of your posts and i think your amazingxxxxxxxxx

 

[silver_penny]

I can see why you miss her smile Your little girl is gorgeous, and you have every right to feel the way you do. I am so sorry you are going through this.

 

[zanDark]

I'm so sorry you're going through this I wish you all the best from the bottom of my heart

 

[fairywings]

I have a friend whos son passed away from Alpers disease at 11 months old, it is form of Mitochondrial disease. There are many many forms of the disease, and seizures will always come with that. My son had a rare illness with pretty much the same prognosis. He was given 13 months and lived until he was 2 years, 1 month and 14 days old. It will be down to your child. We are not sure whether what my son had was Mitochondrial, but I think it was as he died from stomach failure. He could never smile, laugh or cry unless seizure related and I know it is hard but at least you have those memories. Nothing will ever take way the pain you are feeling but you can do sensory things with her. Ryan was blind but we took him to Blackpool last year and he loved the feel of sand on his toes. There are many ways you can make her life enjoyable. It is hard I know and I am sorry. I have heard of her strain of the illness, but you have to take it a day at a time and enjoy every minute. And she could do really well and last until into her teens like some have.

Keep strong I am here if you need me and I can also give you the details of my friend if you like for more support. You are not alone. xxx

 

[Missy86]

 

[Nic1107]

Huge hugs sweetheart I will keep you in my prayers xx

 

[ZannahRain]

Thank you all! I generally handle it all rather well... Sometimes I just feel so alone though, ya know? Haha. I'm sure you all do.

I'm doing much better now. I hope nobody feels like I'm a... I dunno, hard to find the right words... an ungrateful (I guess) mom. I know I've been blessed to have even this much time with her. And I will continue to cherish every day that she looks up at me with those big brown eyes. Some people think that with a special needs child you tend to love them less; I think I can't help but love her more! She is pure innocence. She will never judge me. She will never stop loving me. She will never reject me. Sometimes I think the world could be a happier place if we saw it all through THEIR eyes.

Okay... I'm done being all cheesy now.

Thank you for the love and support.

 

[fairywings]

I totally agree with you. Not sure if I believe in the whole heaven and hell thing but when my son passed on the priest said because he was innocent and had never done anything to harm anyone he would go straight to heaven. You are right they are innocent and so blessed and very very loved. xxx