my 2yr old cousin is sick

cena

Tom(not his real name) has been diagnosed with a very rare genetic disorder called metachromatic leukodystrophy (MLD) There is no cure. It degenerates the brain and shuts everything down. Tom will have a short life.

He is going to temple street this week for insertion of a PEG into his tummy as he needs to be tube-fed now. They got the diagnosis just a month ago & things have declined dramatically since.

Tom is only 2. I am so heartbroken for his parents. This is their firstborn and just had another boy late last year

Leg End Reject

Sorry to hear that, cena. Life can be so cruel and senseless. I hope you all get through this as best you can.

cena

Leg End Reject wrote: »

Sorry to hear that, cena. Life can be so cruel and senseless. I hope you all get through this as best you can.

Thank you. Best we can do help the parents out

Leg End Reject

cena wrote: »

Thank you. Best we can do help the parents out

Yes, everyone is helpless really, but you'll all need support. Look after yourselves.

cena

Leg End Reject wrote: »

Yes, everyone is helpless really, but you'll all need support. Look after yourselves.

They will be well supported by a lot of family members around to help them out

gerrybbadd

Sorry to hear that brother. Feel free to drop me a pm if you want to talk

xzanti

So sorry to hear that

Really puts things into perspective. I was feeling pretty sorry for myself this morning. I don't have problems, just inconveniences.

Thoughts are with you and your family.

statto25

Truly awful Cena, your post genuinely upset me. My heart goes out to the little lad and the family.
When you see stories like this it makes you realise that our current situation isnt bad compared to the plight of others.
I hope that his short life is one of joy despite it all

JP Liz V1

I'm very sorry to hear

cena

statto25 wrote: »

Truly awful Cena, your post genuinely upset me. My heart goes out to the little lad and the family.
When you see stories like this it makes you realise that our current situation isnt bad compared to the plight of others.
I hope that his short life is one of joy despite it all

I have a ice hockey jersey coming that a is been donated by a good company in Canada. Going to have the year he was born and his name on it.. Whatever jersey he gets of the two teams I picked the parents well also have the same jerseys as I well loan them mine. His mom was very to hear this

fits

That’s really tough news. My heart goes out to his family. I hope you are getting good support. We had a diagnosis in this family two years ago ( nothing nearly as serious) and we felt completely isolated afterwards. Family support groups were the biggest help to us.

Feisar

xzanti wrote: »

So sorry to hear that

Really puts things into perspective. I was feeling pretty sorry for myself this morning. I don't have problems, just inconveniences.

Thoughts are with you and your family.

Yea it sort of puts things in perspective alright. I don't think I could cope if anything happened our lad.

manonboard

Im sorry to hear about such a sad event. That must be super difficult for you to have to hold space for. I'm glad you are supporting the parents as im sure they can use all of it. If you need any support yourself, feel free to PM and talk whenever you feel like it. The support train is lighter on on every person its passed on to.
I hope you are being really nice and patient with yourself during this. Everything you feel or think is perfectly ok. Theres no rules for you here.

Obvious Desperate Breakfasts

I’m so sorry, OP. Words are inadequate, to be honest.

L'prof

That’s so devastating. I have two children myself with the eldest just over two. It’s very upsetting to think that something like this could be lurking without warning My thoughts are with your family

Fabio

That's awfully sad, my thoughts are with ye. Stay strong.

cena

All went well with TOM getting his feeding tube. very brave his mother told me Should be home tomorrow or Monday.

cena

Quick update. Tom is now fully paralyzed. His parent told me he has gone down a lot since January

Gregor Samsa

I'm very sorry to hear that update, cena. Doesn't feel right "thanking" the post, but I did feel that I had to acknowledge it in some way. Absolute nightmare for Tom's parents and you and the whole family.

banie01

I'd very much share Gregor's sentiment here Cena.
I hope the family holds up and that ye can access all the support ye will need both practical and pastoral.
An awful circumstance.

Autosport

Very sorry to hear your update and as the above posters said I felt I had to thank your post to acknowledge it

L'prof

Truly awful news for you and your family. Wishing you all the best

Ubbquittious

This iis terrible. Tia a cruel auld universe we live in

Metric Tensor

I don't have anything useful to say but I'm thinking of the wee lad and your family.

Surreptitious

Sorry to hear of your news, I didn't see this thread before. The poor little guy, only 2. Hope you all pull through and don't be afraid to post about it.

Irish Praetorian

Spent minutes thinking about whether or not I should post, I mean what is one more post in the face of this kind of appalling tragedy. I can only hope you find some solace from our expressions of regret at the horrific situation you face.

branie2

Sorry to hear that; awful news to get

Only saw this thread now, so so sad, poor little baby and his poor family, there are no words, it's a nightmare situation. So sorry for you all.

kowloon

Nothing to add but to express my sympathy. That disease moves frighteningly fast!

Blanco100

So so sorry to hear that, poor little man heartbreaking stuff.

El Gato De Negocios

As the parent of a two and three year old this punches right in the guts. How terribly sad to read of one so young having to endure such suffering. All I can say is that I hope the poor little mite doesn't have any discomfort or pain, my heart goes out to his parents in particular and to all his family.

antodeco

So so sorry to hear that. With lockdown being the last year, 50% of his life has been curtailed. Life is seriously ****. Nobody deserves that. I feel so sad for him. I just hope he has some comfort and happiness in whatever way he can in life. I've a 5 year old and even thinking of something like that literally makes me want to cry. I'm so so sorry

Jerrykay6

cena wrote: »

Quick update. Tom is now fully paralyzed. His parent told me he has gone down a lot since January

Poor little guy, will keep him in my thoughts.

jiltloop

Thsts shocking news, life can be really tough sometimes and catch you by surprise. It can really out other stuff in to perspective and sometimes that's the only good thing that comes out of a terrible situation. They'll probably also come to really appreciate the medical staff and what sterling work they do on a daily basis that most people are lucky enough to never get to notice. Having recently spent some time in hospital myself due to a big health scare I have such a new found respect and appreciation for what out health service go through daily and also the suffering that is constantly being experienced in hospitals around the country that were are blissfully ignorant of most of the time. You just have to try and find solace wherever you can I suppose and enjoy whatever you have as much as you can. Easier said than done though obviously. I really hope your family and the little guy find the strength and support to go through whatever journey is ahead and that there isn't too much suffering or hardship involved.

All the best.

cena, I thought I knew who “Tom” was but the age is different to the child I know of. My daughter’s friend’s son was diagnosed with the same disease last year. Her and her partner have just had their second child too.

Please send me a PM if you have a fundraiser page and I will gladly contribute. The adaptions to not only their lives but their home and transport and everything else that will crop up is not cheap.

Wishing your relatives well on this tough journey they now find themselves taking xxx

cena

Thank you everyone for your kind words. It truly is heartbreaking. With this lockdown, it is very hard to have people come in and help out.

No fundraiser set up yet. Parents are waiting till they feel it is the right time to set oneup.

Duckjob

Truly heartbreaking to read I always find it especially upsetting to see young kids in hospital with serious illness, when they should be enjoying their young lives.

I wish you and your family the strength to cope and look after each other through this.

Mad_maxx

incredibly harrowing story , ive a two year old daughter , hopefully the parents of this poor kid can find the strength somewhere

stories like this make me realise if a God exists , it cannot be a just one