Bad news

[mayb_baby]

My cousin (we have adopted her she’s been living with us for 5 years as her mum couldn’t are for her) was diagnosed with muscular dystrophy we never knew her type and when we look it up in the internet we got so much different information.

She lost all use of her legs a year ago and is permanently in a wheelchair, she is now on an oxygen machine at night time. Her breathing is currently at 49% of an average child and her muscles in her hand are wasting.

Well her diagnoses is Limb Girdle and we were told we’d be lucky you have another 4years with her shes only 13 and my mum’s in bits about this and I am being strong for her as she was crying and I held it together for her but it’s really heartbreaking .

Sorry for the bad news it’s just you girls are sooo comforting and I needed to share with someone

xxxx

 

[Eabha'sMum]

i had a brother who had DMD, its hard to watch someone you love get sick, especially when its physical. if you need someone, pm me xx

 

[Sophiiie]

I'm so sorry that's such a heartbreaking thing to happen to someone so young. She's so lucky to have caring family like you though x

 

[mayb_baby]

She’s got a more progressive form of LGMD hers is identical to DMD however she is a girl and that’s unknown in girls, the fact it’s a wasting disease is the hard part to cope with and to see how quick it's progressing is terrifying xxx

 

[divershona]

thats really bad news hun,

i've not got any experience so can't really help much but hope that you get as much time with your cousin as possible

 

[stefni_x]

awk thats so sad x

 

[Eabha'sMum]

She’s got a more progressive form of LGMD hers is identical to DMD however she is a girl and that’s unknown in girls, the fact it’s a wasting disease is the hard part to cope with and to see how quick it's progressing is terrifying xxx

yeah DMD is carried by the mother, and affects boys only... its horrible, its why I got an early gender diagnosis... will she get OT and physo? xx

 

[mayb_baby]

She has an OT and is due to go to Great Ormond street shortly, physio has been stopped as they made her worse rather than helped as they have been making her do too much, no muscle specialists here.
MD in general is rare in girls its more boys and adults so her case is different and we don’t really know how she will go unfortunately but atm they know respiratory and cardiac are deteriorating and they don’t know much else xxx

 

[Eabha'sMum]

great ormond street is great... they deal with lots of specialist cases. When Ryan was younger there was a doctor in the Royal in Belfast who wasn't a specialist in muscular, but he specialised in paediatric respiratory which is where a lot of his problems lay.
Personal experience taught me... enjoy everyday, even the slightest laugh. Take lots of photographs... don't be afraid to talk about what will happen. Drs are great, but do not be afraid to ask questions. Do a bit of research, the more you understand it will make it easier to explain.
For you, you need to look after yourself and baby xx

 

[mayb_baby]

I know we are all attending the childrens hospice in aug the are great there, may I ask what happend or how he was? not sure how to word this xxxx

 

[Eabha'sMum]

he sadly died about 10 years ago, aged 13
he lost the strength to walk at 8, which was earlier than expected. his breathing became heavier and more laboured, and he was intubated in the may, and got an infection, which eventually was too much for him.
Sorry if that was too much information, but I think honesty is best!
Its not a nice experience, I was about 7 or 8, but I remember my mum and dad, (he was from a previous relationship of my mum's) where insistant on letting us know what was happening so we could understand... and I loved them for that! it did make it easier xx

 

[mayb_baby]

See I knew in my heart once the legs and breathing started to go time would be vital and no Im glad yu shared your experince with me

So sorry for your loss, we have taken her to Lourdes and are going again we went to Florida with the make a wish foundation. I was supposed to do the walk of the great wall of China for the MDF but I couldnt get insured due to my health history of severe anemia.

I plan to do loads of chartiy events for the foundation as I beleave in the stem cell research they are doing. My cousin had a bad start in life with her mumas she was unfit to look after her however she is the best king of chilkd you could ask for she never complains ever about her condition!

She is amazing and we are trying to raise £20,000 for her special chair its amazing and will allow her to stand up and have a taste of normality she goes horse riding weekly (disablity center and) she enjoys life and is a happy child I hope that rubbs off on me and my little bro and sis

People say this baby is on the way to help mum cope

xxxxx

 

[- Butterfly -]

Hi hun

I'm sorry to hear about you cousin hun but it sounds like she's got the best and most loving family around her which is so important.

I lost my daughter to Spinal Muscular Atrophy type 1 which is the most severe type. It is a form of Muscular Dystrophy. Mollie appeared normal at birth and then at 6 weeks old her legs stopped moving. Progressively her arms got weaker, at 6 months she was being fed by a nose tube and at 11 months she had a ventilator to help her breathe at night time. Despite all this Mollie smiled and laughed every single day of her life (except her last). She died 19 days past her first birthday.

I have since worked very hard to raise awareness of the condition and with the help of friends and family we have raised £13k in just over a year.

Without doubt your cousins strength will rub off on you and the people that love her. She sounds awesome and I hope you are able to raise the money you need for her chair.



ps we are due the same time. Our new baby thankfully does not have the same condition as Mollie and in fact she isn't even a carrier - we are very blessed.

 

[mayb_baby]

Congrats on your LO and I’m so sorry to hear about your daughter
My auntie wasn’t a carrier so we think my cousins the start in the link as men cannot carry it I think, so I don’t think it’s a possibility with my LO thankfully
Well done on your fundraising, I do hope to do the same me and my family for the MDF as I want to also raise awareness.
xxxx

 

[rainbows_x]

Sorry to hear about your cousin hun.

Haven't really got any advice, but wanted to give you some big
x

 

[- Butterfly -]

Congrats on your LO and I’m so sorry to hear about your daughter
My auntie wasn’t a carrier so we think my cousins the start in the link as men cannot carry it I think, so I don’t think it’s a possibility with my LO thankfully
Well done on your fundraising, I do hope to do the same me and my family for the MDF as I want to also raise awareness.
xxxx

thanks mayb_baby. I have read up a little on your cousins condition and you're right it is very confusing.

If you need any tips on fundraising ideas please don't hesitate to pm me and I would be happy to help

 

[mayb_baby]

She has an acute form its progressing awfully fast hers is a lot like Duchene’s but as I said that’s not known in girls. Oh well we have to live it a day at a time and do the best we can xxx