AAI / Atlanto-axial Instability / Spinal Instability – our personal journey (by Michelle Bolton)

Lots of parents of children with Down Syndrome haven’t heard of AAI, or if they have heard of it they don’t really know what it is or whether to be concerned about it.  I was exactly the same. I saw it mentioned once or twice on an online forum when my son, Tom (who has Down Syndrome), was a baby and thought it didn’t really apply to us.  Then I saw it again a couple of years later and thought I’d better look into it a bit more, and I’m glad I did… 😊

So… what is AAI?  The Down’s Syndrome Association gives a useful explanation:

The joints at the top of the spine and at the base of the skull allow us to shake and nod our heads. In people with Down’s syndrome, the ligaments, tissue that connects one bone to another bone thus holding a joint together, are stretchier. So joints may be looser and more flexible which can lead to slippage of the vertebrae; these are the bones that surround and protect the spinal cord.

Problems can develop if a vertebra slips too far and puts pressure on the nerves in the spinal cord. This can be a gradual process or it can happen if a person is jolted suddenly such as when a whiplash injury occurs. In people with Down’s syndrome, the most common place for this slippage to happen is at the first and second vertebrae of the neck (known as ‘atlanto-axial instability’). Similar problems can also occur between the base of the skull and the atlas vertebrae (known as ‘atlanto-occipital instability’) although this isn’t as common as atlanto-axial instability. These two conditions are collectively known as craniovertebral instability.”

I had read that AAI is more common in people with DS and that activities like trampolining and horse riding could cause injury for those who have it, so I took Tom to his paediatrician to discuss it.  She told me it was highly unlikely to be an issue and, as there were no symptoms (pain, stiff neck, holding his head in a strange position etc), I shouldn’t worry about it, so I didn’t.

Later, for Charlotte’s 6th birthday and Tom’s 4th birthday, we got a trampoline and it crossed my mind again.  Until that point, Tom hadn’t been in any situations where he was likely to do himself any harm, but now things were different….  so back to the Paediatrician I went. This time, I went with a set outcome in my mind, that I wanted Tom’s neck to be x-rayed to check for AAI.  He still didn’t have any symptoms but I had read that it’s possible to have AAI and not to show any signs…. and I couldn’t relax until I knew one way or the other.  Let’s just say I had to be VERY firm and assertive to get agreement to an X-ray – and our Paediatrician is an understanding, supportive doctor, so I dread to think how hard I would have had to push if she was less inclined to look into it!

Our Paediatrician referred us to the Royal National Orthopaedic Hospital in Stanmore but it was rejected as it’s not the place to go for AAI assessments.  So we got a re-referral from our GP to Great Ormond Street Hospital, to the Spinal Surgery department. I looked forward to the appointment and finally getting the go ahead for Tom to use the trampoline.  

On the day of the assessment, Tom had x-rays first and then we saw the Spinal Consultant. They took one x-ray with him looking at the ceiling (head tilted back), one with him looking straight ahead and finally one with him looking at the floor (head tilted forward).  Then off we went to get the results.

Yep, you’ve guessed it….  Tom has AAI. To say it was a big shock would be an understatement.  We only wanted the all-clear to use the trampoline! When Tom lifted his head, the x-ray showed that his top few vertebrae (C0, C1, C2) were moving out of place by approximately 5mm and were moving very close to his spinal cord.  Luckily there was no spinal cord damage already there (symptoms of damage can include loss of sensitivity, loss of movement, incontinence) but there was a real danger of damage if the vertebrae moved any further out of place, so the Consultants started a process of monitoring.  Every 6 months we have been going back to GOSH for the same x-rays and chat with the Consultants and I am delighted to say that, while Tom will always have AAI, it has not got any worse so far.

If at any point it does start to get worse and the subluxation (movement of the vertebrae out of place) becomes more than 5mm, the Consultants have said that, in the worst-case scenario, we may need to look at an operation to fuse the vertebrae together and fuse them to Tom’s skull, which would mean he cannot nod or turn his head.  However, it is unlikely for Tom as over the last two years, his vertebrae have not moved further than 5mm and that consistency suggests they might not. This year, we moved to yearly checks with GOSH and if we spot any symptoms in the meantime we need to let them know ASAP. However, Tom still has no symptoms and we very much hope it stays that way 😊

For more information on AAI, I have found the following links helpful:

NB Please note that this article is about our family journey only and I am not medically qualified.  Please speak to a medical professional if you have any concerns.



A huge thank you!

As we look to finalise the 2018 accounts over the next few weeks, we would like to take the opportunity to thank our generous donors and fundraisers who made the aspirations of DS Achieve a reality during 2018 by giving or raising a fantastic £4,816.76.

Alongside money raised from our training events and personal fundraising by our Trustees, our donors and fundraisers have enabled DS Achieve to build a level of unrestricted reserves which have been used to deliver training events to empower families to enable their child with Down Syndrome to fulfil their potential.

In the final few months of 2018, DS Achieve was able to put on training events for our parents, carers and professionals. We also enjoyed a hugely successful launch event where around 40 children and their families joined us at Soft Play City to celebrate. Feedback from all of these events was positive and highlighted their value.

As well as the wonderful events that we have been able to fund, the 2018 donations have also contributed to the behind the scenes activity of DS Achieve. We have a fabulous website, have invested in marketing materials and ensured that we are equipped with relevant subscriptions and insurance.

Most importantly, we have established a level of reserves that means we are financially viable with a strong strategic plan for the future – one which we are excited for.

So thank you once again, our wonderful, supportive donors and fundraisers. We could not do it without you!

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DS Achieve receives £500 donation from Football for Fathers!

We were absolutely delighted to receive a donation of £500 from Hitchin’s popular Football for Fathers organisation (FFF) as part of their end-of-season Awards.

FFF evolved from the original idea of a weekly kick-around for football-loving dads in spring 2017, to a group of over 80 dads of all ages and abilities, paying subscriptions, playing two sessions a week on professional, floodlit astro-turf, summer, tournaments, awards evenings, charitable fundraising and offers of international friendlies!  (https://footballforfathers.co.uk/)

FFF nominated Bobby Lee as their first-ever Clubman of the Year, and in addition to his trophy, kindly donated £500 to DS Achieve.

Photos from the FFF presentation can be found here: https://footballforfathers.co.uk/2018-end-of-season-awards, and Bobby popped into Little Achievers to present the cheque to the Trustees in person.

We’d like to give a HUGE thank you to FFF for their support which will be used to support our children in 2019.

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Could this be you or someone you know?

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DS Achieve is looking to expand our team of trustees to include someone with a strong finance background and accountancy qualifications. The role is a volunteer role.

If you think you might be interested or you know someone who fits the bill, please have a look at the role profile and get in touch!

To apply, please send your CV and a covering note explaining your interest in the role to info@dsachieve.org. Additionally, if you have any questions, please don’t hesitate to contact us and we can arrange a time to chat.

The deadline for this role is Friday 19th October 2018.

You can view the role profile HERE

We look forward to hearing from you

DS Achieve launch celebration.... It's party time!

On 2nd September, we held our official launch for DS Achieve and what a party it was! We were absolutely delighted that around 40 children and their families joined us at Soft Play City to celebrate - it was lovely to see so many old and new friends coming together to enjoy the day. We'd like to send a HUGE thank you to everyone who made it such a special event!

We created DS Achieve to help families support their children and young people with Down Syndrome to achieve their potential and we're focusing on providing new education and training programmes. Our website Events page has all the details of our latest training events and our fantastic Little Achievers programme - both kicking off in September. But that's just the start... We've got big plans for all age groups which we can't wait to get started on, and at the launch party it was great to get the chance to get YOUR input on what you'd like us to do! Please do email us at info@dsachieve.org with all your ideas. We'd love to hear from you.

Thank you to everyone who has supported us and DS Achieve so far. We can't tell you how much it means to us to receive all your kind words and good wishes... and watch this space for lots more exciting news to come!

DS Achieve fundraising in Zurich!

We are seriously in awe… One of our supporters, Stuart Cleworth, has completed the Zurich IRONMAN challenge on behalf of DS Achieve.

The IRONMAN involved a 2.4 mile swim, a 112 mile cycle, and a marathon (26 mile run). Even the thought of one of these activities exhausts us, but Stuart started his training early on and worked really hard week-by-week to prepare. It was a gruelling event, with Stuart managing to complete it in only 13hrs 9mins and in 33 degree heat.

On top of such an incredible achievement, Stuart also raised an amazing £1,120 for DS Achieve. CONGRATULATIONS Stuart and a huge THANK YOU1!

You can watch Stuart crossing the finish line HERE.

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Exciting news.....!

Hi everyone, Kelly, Gillian and Michelle here.  We have some exciting news….

We are delighted to announce that we have launched! 

After many months of hard work to get DS Achieve registered with the Charity Commission, choose and design the services we will initially provide, get our policies in place, create our website and much more, we are now up and running!  And we would love to celebrate with you at our launch party on 2nd September at Soft Play City.

So please come and join us, meet our team and find out more about how we can help your child/young person and your family.  Go to our Events page to book a FREE ticket.  You can also check out our other events and workshops here.

We hope to see or speak to you soon,

Kelly, Gillian and Michelle xx

 

Happy World Down Syndrome Day!

What better way is there to celebrate this important day than spending time with friends and eating cake!

To raise awareness about Down Syndrome and also some funds for DS Achieve, Michelle hosted a coffee morning at home on World Down Syndrome Day and invited local friends.  Teamed with Bill and Cath, her parents-in-law, they welcomed more than 30 guests over the course of the morning to provide tea and coffee and a selection of beautiful cakes.  The generosity and support of the guests, as well as several who couldn't join, was, quite frankly, amazing!

DS Achieve is delighted to confirm that total fundraising came to £470.  Thank you to all who donated their time, cake and their money to make the morning very enjoyable and a huge success.

Charity ball fundraiser a success!

Friends and family danced until they dropped on Saturday evening, at a black tie charity ball in aid of the MS Society and Down Syndrome charity, DS Achieve.

On Saturday 14th October, guests at the special event, organised by Michelle Bolton and Katherine Jardine, helped to raise £3,600 to be split between the two charities.  Held at the Noke Hotel in St Albans, guests were treated to a three course meal and coffee, incredible live music from local band Number 7 (no7music.com), and more music provided into the early hours by The Noke resident DJ.  Professional photographer Bobby Lee, of Rapid Eye Images, was on hand to take stunning pictures of the guests, from which he very kindly donated all profits.

Thanks go to a large number of local businesses, including Centurion Golf Club, Lussmans, The Beech House and Emma Fletcher Photography, for very generous prizes for the silent auction and the raffle.  Also to Rachael Partis (https://www.etsy.com/uk/shop/RachaelPartisDesign) for donating the beautiful design work on the posters, menus, and seating plan, as well as a raffle prize.

Michelle said "The MS Society and DS Achieve are very important charities to Kat and I and we wanted to organise something fun to help raise money for such worthwhile causes.  We are delighted with how it all went.  It seems everyone had a great time, and raised money at the same time... what could be better!  We've had a number of people ask if they could let us know about tickets for next year's event, which we hadn't even considered, so that's a fantastic indicator that the night was a success.  Thanks to everyone who made it happen."

If you'd like to get involved in fundraising for the MS Society or DS Achieve, please visit the web pages:

- MS Society: https://www.mssociety.org.uk/get-involved

- DS Achieve's page https://dsachieve.org/get-involved/ (or email info@dsachieve.org)