My 8th Birthday

Last week we got back from our trip. We weren't able to get online with my laptop which was okay by me as I got to use it more :) Mum did use Dot's once but didn't do a big update as you can see, so here goes ...!

Here are some pics of my birthday. As usual, there were lots of balloons, pressies and tons of fun!

We stopped off for a toffee sunday on our way to the park

This is me and my one of my big brothers on the swing

I make them sing Happy Birthday lots as it makes me laugh!

More on the trip to follow ... :)

Just Giving

Wanted to post a couple of things here.

Neil from the New Life Foundation has started a fundraising page for Gracie. To check it out go to www.justgiving.com/talithagrace

Hubby and the eldest three are planning a 20 mile mountain hike over summer with friends and we are going to organise a home school sponsored walk.

Also Kay in London, I'd love to hear more from you! I've a list here that may be of some help. My email is deborahmcclenahan@gmail.com Hi to your special angel and the rest of the team :)

Deb xx

May 13th

Back up and running again after modem problems! A HUGE thank you to the Mowatt family, Mary O'Donovan and anonymous for your very generous donations on the just giving page. May God bless you all.

My News

We have had some beautiful sunny weather here and I'm really enjoying being outside in the garden lots.

Here I am with my two little brothers. We love to splash around and play with water and bubbles.

I also like my swing and hammock but best of all I like watching my brother bounce on the trampoline with me. That makes me laugh lots.

I'm also trialling some different things ...

This walker is great. We didn't know that the physios here use them as nobody told us and I'd have really enjoyed it when I was little :/

... and I'm finally starting hydrotherapy this week so something else to slot into my schedule :) I love water so this is going to be just fab!

The visit to Dr Craig my cardiologist went really well. No leaky valves! They did such a great job looking after me down there. Mum says that him and Dr Casey are the nicest consultants in the world.

Wishing you all a wonderful spring holiday.

Love Gracie xx

This demo buggy was soooo lightweight and compact! Mum says she likes it a lot as you see me and not the chair - plus she will be able to lift it (light weight aluminium) into our car. Usually we have to take the heavy seat part off my inside chair and refit it onto an outdoor base. With our last car nothing fitted in the boot so dad had to dismantle the arms and head rest and then reassemble it all which was a real pain. This will be fab and I can't understand why all kids like me don't get given one!

April 2nd

Today, my new car seat finally arrived. We had been waiting for a fixing strap to come from Denmark. Here I am trying it out.

Thank you again to all my friends. We will be forever grateful for your love and support.

Gracie xx

Reece's rainbow

A few years ago I came across this wonderful ministry. I was so touched and if I had my way, would bring every single one of these kids home.
I urge you to CHECK IT OUT

We have been so blessed and from here on in I have decided that any funds generated from this site via the remaining T-shirts or mobile phones will be sent to Reece's Rainbow to sponsor the kids waiting for adoption and to the therapy center where TG attends in England.
There are wonderful kids with Down's syndrome out there needing a home. There are also wonderful families out there wanting these beautiful kids. This helps make it all happen!

'Reece's Rainbow is a registered 501(c)3 charity which promotes the international adoption and rescue of children with Down syndrome exclusively. We work to raise grant funds from individual donations to make the cost of adopting these beautiful children affordable for interested families. In only 2 1/2 years, we have found adoptive families for (140) children in (26) countries around the world. We still have over (150) waiting children who need donations and grant sponsors! Even $20 can make a life-saving difference. Please sponsor the rescue of a waiting child today! '

Catch up - 2nd March

I can't believe that we're into March! Life is busy. The kids have asked me why we haven't had another blog giveaway as yet when one was scheduled for January! They really enjoy doing them so I will endeavour to sort it out soon. Watch this space.

I had a phone call from the Tools for Living rep this morning and he hopes to have the complete car seat when he comes next Monday, which is very exciting. The seat part is with him but he is waiting for the fixing strap etc to arrive from R82. He is coming down on Monday to demonstrate some other equipment which is another amazing story.

When I started up this blog, TG had two needs. We decided that we would budget for one as a family and try and fundraise for the other. One was a car seat, and the other a soft seater for the home to give her an alternative to her chair or the floor. Her chair is great but only for limited periods due to high risk pressure areas. We wanted something that she could relax in to watch her dvds, which would also offer the level of support required. Both were costly and I had to sit down and figure out which was the priority. For safety reasons, we went with the car seat and I started pricing up the soft seat in order to budget for it in the long term.

In searching for this product, I came across a website who sell specialist equipment. On the site there was a link to the NewLife Foundation I got in touch and was encouraged to the nurses to submit an application which should have been a relatively straight forward procedure, only the trust here didn't want to put it in writing that they weren't prepared to fund this item for Grace! On the other hand they weren't prepared to buy it so a lot of pushing had to be done and even at that, the 'supporting' letter only stated that they'd already supplied our daughter with a chair to meet her needs. Thankfully a social worker in our last area was able to step in and provide the information needed.

Here is a little bit about what they do taken from their website (I love it!)

When we heard the law on car seats for all children was changing and that families couldn’t afford the high specifications for the specialist car seats they needed for their disabled child to comply with the law, we campaigned for these to become classed as “essential equipment” supplied by statutory services. This campaign continues.

When we heard that families have difficulty in getting people to understand their child’s conditions and that this isolates and segregates them, we formed a working partnership with families to highlight conditions through the media so people will be more understanding of the needs and behaviours of disabled and terminally ill children. This awareness activity continues.

When we heard that thousands of families and children were being denied and facing lengthy waits to get vital equipment we not only launched our equipment grants service to help out the most urgent cases, but we also launched a national campaign called – ‘it’s not too much to ask – that disabled children get the equipment they need’. This has had Government and statutory bodies responding and taking action. This national campaign continues.

When we heard that children’s rights to essential equipment were being compromised, we commissioned a barrister to give a legal opinion. Our ‘the law protects’ activity informs people of their rights. This awareness activity continues.

When we heard that statutory services had a responsibility, defined in law to provide equipment to disabled children we began our equipment intervention programme and began to analyse all applications for equipment grants, challenging the responsible local body to fulfil these requirements as a primary responsibility. If they refuse then Newlife Nurses will consider the applications, but along the way we are constantly challenging the limiting criteria and unfair rationing to affect policy long-term in those areas. This intervention awareness activity continues.

On Friday I got word that the application was going ahead, not just for the soft seater but also for a couple of other essential pieces of equipment that they wanted to buy for our little girl. They know how dire things are here in N Ireland and once again I am pretty much blown away.

It is really a lot to take in as for the past few years, I feel that I'm banging my head of a brick wall. It took over six years to get a bath seat and to be allowed to borrow a rather bulky stander. We've bought several outdoor buggies ourselves in an attempt to meet TG's needs. We were on a wheelchair waiting list with no end in sight so over a year ago we agreed to flag that away and get the local authority to issue us with a outdoor base (which is what they would have done anyway). This basically means that we use the seat part of Gracie's indoor chair with a different outdoor base. The reality of this is that every time we go out, we have to take the very heavy seat apart and remove the arms to get it into the boot before reassembling at the other end. The NewLife Foundation are going to supply a much needed lightweight, compact buggy which will be an absolute life saver. The difference to the quality of kid's lives that these guys are making is wonderful.

And, hopefully we'll get together with the fund raisers soon and TG's story can help them generate funds to help more families.

Meanwhile, we can now go ahead building a sensory garden this summer. The plans have been floating around in my head for a long time so it's another exciting development! AJ is super with woodwork so I've 'commissioned' some pieces from him. Will post photos of progress here.

THANK YOU ALL

Thank you Thank you Thank you Thank you

'Thank you' doesn't somehow adequately express the gratitude we feel for the love, kindness and generosity we have experienced during this venture for 'Gracie'.

Today a wonderful family presented us with a cheque for £725.00. They took it upon themselves to raise funds to help our little girl and their friends, co workers and children gave liberally and lovingly. They wish to remain anonymous as it they feel it is of the Lord and that he should rightly get the glory. God has truly met our need in an amazing way and for that we are deeply moved, humbled and thankful. I never dreamt that less than three months after starting up this blog, I'd be ringing up the rep telling him to bring the car seat on over!

And here is what you all have achieved! This is the car seat - made by the Danish company R82 who supply all of Europe. They like most companies are costly but the stuff is robust and built to last. The basic chair part is retailing at £1964.00. The additional parts are: headrest £152.00, 5 point belt £76.27, foot board £132.00 and fixing strap £110.00. The total would normally cost £2397.00. The government do not supply this item to parents. Now here is the really neat part:
This year Europe brought out some new regulations. Last year's stock only meet three out of the four so R82 have a few ex demos knocking around that they can't sell as new. The rep has sourced one in the correct size and they are knocking £1000 off the chair price. We also don't need a new head support as the one in Gracie's R82 bike trailer is identical to the car seat one. So the total required is just over £1,200 which we now have!! There are other car seats retailing for around the same amount, but none are specifically manufactured to offer the level of support that is needed. TG has mixed cp, both athetoid and spastic quad. This one swings out to make it easier to place a child in, before swivelling round and clicking into place. The lateral support and wrap around headrest are crucial and reclined position will mean that she won't be continually having to try and hold her head up. The Panda seat is a variation of the seat in her Panda bike trailer we got a few years back and really works for her so I am delighted that she is getting this particular car seat. Nothing is impossible with God!

I will continue this little blog for updates and news and will post a picture of Miss T modelling her new car seat as soon as it arrives.

Yours gratefully,

The Mc gang.