I am 48 and have not had a paid job for almost 17 years now, every time I think it's time to go out there and get a job, do a course it all goes horribly wrong. However, I do give up some of my valuable time to work as a volunteer for a couple of charities to give back a little of what me and my family get from them.
My husband took voluntary (if you can say - with his hands tied behind his back is voluntary!) in September. We are now looking to see how best to provide for our son, whilst keeping him at home, as we know what his greatest needs are. Ultimately it is his choice at the end of the day, and, despite what some professionals and disgracefully other parents of special needs children may say he does know which side his bread is buttered!!
We are grateful for all the support we get off Hope House (this is not a place for the dying but a valuable life line to those of us who have children who are not expected to reach their 21st birthday) and Action for Children (formally N.C.H. - the disability department.) Unfortunately there is not much chance of having family link support when your child is confined to a wheelchair, due to manual handling and personal care issues, so we have no choice but to get respite outside of our home.
About my family:
I am married to the fantastic father, Philip, of our one and only son, 21 years on August 10th. 20012.
Our amazingly awesome son (DMD) was 15 in September.
He developed Sudden-onset Dilated Cardio Myopathy 30 months ago. It took the people "in the know" from May to July to actually see what was going on, by which time it was almost too late. But, for the quick thinking of Dr. Kannivelu - the newly appointed Consultant Peadiatrician, specialising in Cardiology, our son would not be alive today. Dr. Kannivelu works very closely with the very clever and lovely Dr. Ashish Chickermane from The Birmingham Chidrens Hospital.
This all kicked off just as his school was closing down, Carolyn Evans (clinical nurse specialist) recommended he went to a residential school, my husbands step sister died of breast cancer, my parents were taking a very sudden decline in health (both of them in their mid 80's) and my husbands Mum and Step-Dad, although willing, both struggle with health issues that make helping out with child sitting hard.
Our son has just been assessed by Action Duchenne's Decipha programme. We have to wait for the results to see whether he will benefit from the said programme. We having everything crossed hoping this will shed light on what his specific learning difficulties are.
We are members of the D.F.S.G. Philip being on the committee and we did have a stint at being a link family but I think this was too early on for us. I sometimes think I care too much and tend to carry the world on my shoulders - some people take advantage of this and it made me ill! I respect the work they do but it leaves me cold and I have had no choice to back down/off.
I find the M.D.C. is too intent on research and puts a lot of pressure on parents to fund raise. There is not a lot of advice/support on the care side of things for my liking. The day they got rid of the Family Care Officers was a very dark day for those the hardest hit. NORTH Wales does exist by the way - the Welsh Assembly is in the South - there is no motorway linking the two so we may as well be a separate country altogether.
I now turn to the PPUK to see what they have to offer . . . . . . .
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Mold, North Wales
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Okay I just spent 10 minutes looking a Christine Davies's profiles and still not sure if you were one of them and there's still more to look at! I also have a page at donnadoolittle with a picture of a puppy on it. That might be the better bet for you to look for and send a friend request and then I can switch you over to my regular one. The doolittle one is for dog rescue.
I hope she can help you. I've met Christine. She does the Jett Ride where kids on bicycles ride cross country raising awareness and we always host them when they come thru our way. I know what you mean about wanting to connect with "real" families. I'm a grandmother of Jacob, 11 1/2 with Duchenne and I've tried to start a grandparents group in our area but have had no luck. I also started a group on PPMD and had no luck so I left it. Now I'm trying to organize a photo shoot for the boys in our area for this Sunday. It's at no cost to the families and I still only have 5 that are coming. It just seems like everyone wants to do their own thing when it's convenient for them. If I do a fundraiser that requires a lot of work, it's like pulling teeth to get help but the day of the fundraiser they are all there to get their names in the papers. And of course I have a mouth on me so I've "angered" some of them with my candidness. I don't come on the PPMD page too often. Just once in a while to see if any other PA families joined in our area. I can't afford to participate in their fundraising events or go off to their conventions. Way too expensive for us. If you want to be a friend on FB please look me up. Right now I have Jacobs picture as my profile. He is kissing a dolphin.
Hi Christine: I just read your profile and was thinking that maybe if you contact Christine McSherry of the Jett Foundation she might be able to help you in some way. Her son is either 14 or 15 and she's always looking into things that might help the boys as they progress. Even though she's in Connecticut it might not hurt to try?
Hi, it's lovely to hear from you. What school is Benjimin going to now? That's great that he's enjoying himself. Frankie really enjoyed his school too, it's so important to find the right one. I'm glad to hear you're feeling happier too.
It's great to be connecting people in the UK, if there's anything you're struggling with, let me know, because who knows, perhaps we've been through it and can help in some way.
Hi Christine, It's been ages since I have used PPMD, logged in and noticed that you live very near to us and most of our family are in North Wales. My name is Lorraine, Davies to. our boys are the same age also ( how strange ) We live in Neston. Alex will be 15 in November. Speak soon, Lorraine x