I have an 8yr old son called Kieron with CFC syndrome. In March I won £500 worth of prizes in a local competition and decided I would do my own fund-raiser for CFC and Costello UK. On the 16th July I held a party and a raffle and raised just over £2000. I hope this will help towards the funding of a CFC group which is much needed in this country

On the evening of Friday September the 10th we will be having a joint Costello Syndrome & CFC meeting. The aim of the meeting is to discuss with the families the future of support in the UK for both of these syndromes. A number of ideas have so far been proposed, one being an expansion of  the Costello support group to grow and include CFC.

Thank you Marie for your hard work, and we look forward to seeing you and all of the Costello and CFC families at our conference.

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It makes it all the harder when you are constantly seeing reminders of the life that you’re missing out on… family and friends with their ‘normal’ children who are running and babbling and playing… and it really drives into your heart that your child is just not the same as other children.

Last Friday for instance… I found myself babysitting my niece and my two nephews. To put this in perspective, my niece is 8 months older than my oldest child. My oldest nephew is 4 months older than my middle daughter, and my youngest nephew is 4 months older than Nicola.

Given their close proximity in age it’s only natural that the children are all friends and play well together… that is, all except Nicola.

Where my nephew is off running and playing with cousins and siblings, babbling away, eating everything in sight and generally just being a totally typical terrorising toddler, Nicola is completely immobile. She doesn’t even sit unaided. She doesn’t talk, she doesn’t walk, she doesn’t run… and the limit to her interaction is, or at least it was, crying at anyone that so much as breathes in the same hemisphere as her.

Seeing him, and every other toddler around us, meet their milestones, take their first steps, say their first words etc, while we struggle to achieve even the tiniest of tiptoes forward is, to say the very least, heartbreaking.

Don’t get me wrong, I don’t begrudge their happiness with their healthy children. Not at all! And while I wouldn’t give Nicola up for anything in the world or change anything about her, I wouldn’t wish this kind of life on anyone, least of all on the days that the silver lining has gone an ugly shade of black.

But every now and then, through the darkest, cloudiest and most miserable days, children like Nicola have this way of surprising us… just when we need it most.

About a month ago we had a massive breakthrough in her communication… she looked at me and she said “Mum. Mum, Mum, Mum.” Of course, to say I was ecstatic was the understatement of the century… until we told her speech therapist who heard a similar sound and told us that it was just a random convergance of sounds made as she chewed on her fingers… and it wasn’t really a word at all.

One step forward, two steps back.

Sigh.

But then, last week, something amazing happened. It was clear, it was concise and it was almost precise. She picked up her hand and she waved.

Ok, so she’s almost two. I get that… waving for a two year old isn’t a big deal…

But for MY two year old, it’s a mammoth step! It’s phenomenal! It’s more of an achievement than man’s first steps on the moon or the discovery of the theory of relativity.

MY two year old daughter waved! She picked up her hand and waved! She communicated with me!

Between the tears I waved back, delighting in the furious little movements of her hand pummelling up and down and the gorgeous smile on her face, the pride in her own achievements mirroring the pride I had for her.

Thinking quick I whipped out my phone and started the video recorder, getting a gorgeous clip of her waving and smiling at me. Then, just was I was about to stop, she did something else.

She responded to my waving to her by signing ‘good waving’ to me in Makaton.

She used her finger instead of her thumb, and it wasn’t entirely as precise as it could have been, by the message was so clear even my father knew what she was saying. “Good waving Mum. I’m proud of you!”

Jo

Mum to Nicola – 22 Months – HRAS+

Living in Australia

Sometimes somebody in a far of land can make  insensitive and insulting comments, and offend not only the local community, but communities around the world. On Sunday July 11th ago one such indecent happened in Australia.

Channel seven Australia has a show called weekend sunrise. Being in England I have never watched it, and was alerted about the indecent by one of our Australian members. During a regular segment about a school teacher who was suing the government over her damaged larynx, after constant yelling in order to control a composite class of Year 6 and 7. The regular guest Prue MacSween made some disturbing and insulting comments about children with special needs. I watched the segment on You-tube, (because channel 7 had pulled the segment from their website) to see what all the fuss was about,  and was surprised that at no time during the discussion was any mention as to why the teacher was yelling in the first place, and is yelling appropriate behaviour for a teacher in the first place.

As the discussion progressed the following statement was made by  Prue MacSween

Children with special needs should not be allowed to be in mainstream, classes with “normal” kids, • they hold them back (children without special needs) • Children with special needs should be “put somewhere and trained” and “properly administered to” • And that all boys are “retarded”

WHAT! did I hear that right. I watched the segment to the end, hardly able to comprehend that not only had a regular on the show just made one of the most insulting narrow minded statement on TV. The shows other presenters made no effort to apologise.

The TV company who make the show have said “Live television is always unpredictable. But clearly, Pru offended many parents with her remark”.

Sounds like an excuse, don’t the presenters and guests have a code of conduct, and if the TV company have taken the time to make the above statement, why have they not apologised to all the parents that have been offended.

On the other hand MacSween did apologise sort of.  She made an apology on her twitter feed, she tweeted the following message:-

“I apologise to those people who were offended by my remarks on Weekend Sunrise, however, you have misunderstood what was said.

What a great way to apologise,  use twitter, then take the apology back by blaming the viewers for misunderstanding her words. Right, that must be the reason why you can not take the time to formally apologise on air, your apology may be misunderstand .

Over a week has passed, since the show was broadcast, in that time a large and growing protest group has been set up on Facebook site  called “Prue MacSween and Channel 7 Should Apologise” with over 2,300 members. The TV station has not apologised for the upset and offence, MacSween has not apologised. I wonder why this would be so hard to do. And sadly the only concusion I can draw is that there is a possibility that the station stands by the comments and is Institutionally discriminatory.

I would like to remind Channel seven and the production company this is the 21st century. Not the 18th, and perhaps if your researchers  had spent a little time researching the original story, then maybe such bigoted and offensive views would not have been aired.

To help with future research about teaching,  you may like to take a look at the following website BFI , and maybe the teacher in question should find a new profession if teaching results in her yelling in class.

Update 20/07 /2010 9.40 am

After the show aired and viewers complained to the station, the video feed from the show was pulled from the web. Have Channel 7 never heard of the Streisand effect? The video has now been re-instated and can be viewed on-line by visiting the following link : Sunrise Allstars The offending piece begins about 4.44 mins in, after the discussion about the teacher.

Still no apology made however.

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Each day that passes Helaina is an inspiration to us, her smile lights up our days, and each day that passes is precious, to be savoured and enjoyed.

I don’t know what new challenge tomorrow will bring, if some new medical complication will occur. But what we do know the past 16 years has been a roller coaster ride.

Our aim is to help and support as many families as we can, and we can only do that with the support of the public making a donation to our charity, or helping us to spread the word about our work and Costello syndrome.

So if you have a blog, a website or are on Facebook or Twitter, please help by adding a link to us, or tweeting about our site.

Part 1

Part 2

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God looked around his garden and he found an empty place,
He then looked down upon this earth and saw your tired face.
He put his arms around you and lifted you to rest.
God’s Garden must be beautiful, He always takes the best.
He knew that you were suffering, He knew that you were in pain.
He knew that you would never get well on earth again.
He saw that the road was getting rough and the hills were hard to climb,
So he closed your weary eyelids and whispered
“PEACE BE THINE”.
It broke our hearts to lose you, but you didn’t go alone,
For parts of us went with you the day God called you home.

In Loving Memory of Willa Clementine Hunt

An incredibly brave little Costello Princess who grew her Angel wings at the age of 2.

09-07-2010

Rest In Peace Willa.
xxooxx

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The short video below was produced from the Power-point presentation that was made to document what she did and achieved.
We thank all of the staff and parents who attend the sure start centre for all their support.

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Right now, I want to talk about a friend.

This friend probably isn’t what a lot of people would consider a friend. I have never stood in the same room as her, nor have I heard the sound of her voice. I have never held her hand or hugged her, I don’t know what sports she follows or what music she listens to, but we share a common ground that is so deeply entrenched in our hearts and souls that none of that seems to be very important.

We both have daughters that are HRAS positive.

Our precious daughters are almost the same age, they even share some of the same traits… the same gorgeous smile, the same big eyes and the same sunny outlook on life… but that’s about where the similarities in our lives end.

Tonight, as I watch my daughter sleeping in her bed and reflect on how far we have come and how far we have to go, my friend is watching her daughter sleeping and reflecting on the fact that her life is nearing an end.

You see, my friend’s beautiful, precious little girl has cancer that cannot be treated and they have made the heart wrenching decision to let nature take it’s course.

I cannot even begin to fathom the immensity of this decision, or the emotions that they struggle with on a daily, or even hourly basis, yet she does it with poise and grace. I read her emails and I cannot help but cry because even now, in her deepest hour of need, she is not only a friend, but a teacher, using her own pain to help guide others on this journey.

And with such a good and gracious person as a teacher, how can I not be a student?

Indeed, from her words, I have learned a great many things, some of which I already knew that have been reinforced in my heart, and some which are new words of wisdom that I am holding fast to.

I have been reminded that every moment is precious. We never know that is just around the corner. It is time now to hug my children, play with them, make them smile, make them laugh. Revel in the joyousness that is the foundation of new life, spend time with my partner and just delight in the little things that make us both smile.

I have learned to appreciate therapy and medications and doctors visits and all of the other stuff that comes with this life that I have had thrust upon me, for even though I may curse these things for being the bane of my existance on a day to day basis, but each time I curse these things I am also reminded that I have her in my life. I may despise therapy, but every day we do it is another day that I still have my daughter.

I have learned that even in the face of adversity that may seem impossible to overcome, I will find a way to get through. I have the strength and courage of a family with wisdom that spans half a century and encompasses the face of the globe, all of whom will be standing with me when I need them.

Nicola and her medical complexity may have turned my life inside out and upside down, and it may have challenged everything I ever thought I knew in my life, but it has also brought me friends and family who have become an important part of my life.

I may not see them every day, or even every other month. I am lucky if I see some of them every other year. I may not know their faces or hear their voices, but they are still in my thoughts every day. I laugh with them in their moments of happiness and I cry with them in their moments of pain, but most of all, I am just thankful that I have them as friends.

Now… with that, I have three sleeping children, medication has been given and feeds are up to date… so I am going to go and enjoy a few moments of precious sanity, savour a nice warm shower in this faux winter and then curl up in bed with a good movie and enjoy some nice spacious sprawl time before all of my off spring end up in my bed, which will be in about two hours and thirty seven minutes, give or take a few seconds.

But I leave you with this…

Take this moment and own it. Cuddle your children, kiss your partner, eat that piece of chocolate, and revel in the small things… don’t take a single moment for granted, because you never know what tomorrow will bring.

Posted By Jodi B, Australia

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We made a tiny commission, but over the years the prices have risen ever higher to a point where even our most loyal supporters would be put off  purchasing any of our goods.  For me having a small shop and our own range of branded goods can help us  in many ways.  Firstly making a small profit to help fund the charity, but most importantly spreading the word about the syndrome.

When talking to anybody for the first time about CS, the most common reaction is a blank look followed by the two words I have heard more then any other over the years is “what’s that” . Not just from  members of the public, but Doctors, nurses and other heath health professionals.  The simple fact is that Costello Syndrome is rare, with a tiny world population estimated to be around 350- 400, why should people know.

I have always had a plan, educate the world about Costello syndrome,  even if I have to do it one person at a time, or one web visitor at a time. Raising awareness is the key to a better understanding of CS, and at the same time people will become aware of rare disorders in general.

Which brings me back to the shop, I needed a solution, Cafepress was too expensive,  I decided to  go into the retail business myself.

So thanks to my good friend Paul W, I bought some badges for my first stock item, and found a solution to the shopping cart in a cool application called ECWID, and a new shop was born. I will be adding more items from apparel to cuddly toys over the next couple of months. But the badges had to be the first item I sold because they are special magic badges. No its true, they are magic,  they have the power to change peoples attitudes and behaviour. While wearing a badge strangers stop having a strange look and  when chatting don’t say “what’s that”, they admire the simple artwork … Designed by Lisa S,  then go off an look at the website.

By wearing a badge people can show they support a great cause, and help me to teach the world about CS.

So please visit our shop and show your support.

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Thursday 26^th August 2010
The first Tee off will be at 11:00am,  Teams will tee off at 10 minute intervals

Join us for a bacon sandwich tea or coffee before you tee off. Play to win the Costello Cup. We will be inviting the  winning team to return free in 2011 to defend the cup, Prize’s available on the course On return to the club house there will be a welcoming buffet followed by the Presentation of the coveted Costello Cup and other prizes.

All this  for just  £200.00 per team

If you would like to enter a team, or require more info please contact us using the form below.