Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


Adam

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Max Appeal Trustees & Staff

Mark Tripp, Trustee

Mark TrippMy name is Mark Tripp and I am married to Kelly and have two beautiful children Adam (11) and Zoe (9). Adam has 22q11 deletion syndrome and like so many was only diagnosed after a 6-year search for answers as to the many issues that he has to overcome. As a family we were lucky to find Max Appeal early on in our 22q11 journey and with a desire to help spread awareness and support others I was honoured to be asked to join the board of trustees in late 2016. My main role sees me active within the Facebook support group and also assisting families locally and nationally.
Like the other trustees I juggle my responsibilities between work, family and Max Appeal with an ever-increasing busy schedule but it is my work for Max Appeal which brings me the greatest pleasure as I know when we get it right we are able to make such a difference to our extended 22q11 family.

As I type this we are all busy planning your events for 2018 and I would advise you all to keep an eye out for information about our Youth Camping weekend, 22q at the Zoo and the other family meetups that we will be announcing, coupled with these we have a redesign of our website coming, a wonderful new logo along with a new clothing range and more importantly an updated consensus document all in 2018. Now I'm sure you will agree that is a lot for a small board to deal with but as usual we also commit to providing the day to day support either on fb, via email, telephone or at meetings that so many families find vital.
I want to finish by telling a story that happened to me recently as I want to highlight to everyone the importance of making sure you don't ever give up seeking answers and diagnoses from medical professionals, these lessons also extend to education and beyond.
'I was recently helping a wonderful small charity in Biggleswade which provides support for families with ASD, my simple job was to go door to door around local businesses and ask if they would display a small poster advertising their support group. Without fail as soon as I mentioned the word 'autism' I could see an instant change in the way I was received and I'm pleased to say that over twenty businesses are now displaying these posters'
What's the lesson you may ask, well as a family like so many of you we had been told repeatedly that Adam had autistic tendencies and yet no one wanted to formally diagnose the condition, through determination and a reluctance to stop asking we were lucky enough, if that's a correct term to use, to get a full diagnosis of ASD for Adam. This diagnosis has helped us unlock avenues for extra support for our family, in particular this has had a huge change in the way school help Adam manage his day. So whether its ASD or any other medical condition I am passionate that it's important healthcare professionals formally diagnose these conditions as this helps to access support both medically and educationally, this is without the extra benefits for supporting PIP and DLA applications. I too was fed up and beaten as parent hearing far too often 'well we don't want to give Adam another label'. It was when we realised that sadly 22q11 alone wasn't going to unlock the help he deserved that we learnt the art of persistence.
We will continue to raise awareness of 22q11 conditions at Max Appeal through our extensive network and of course the APPG,but in the meantime keep pushing for those diagnoses, you as parents, husbands,  wives, siblings and carers etc are the best advocate anyone with 22q11 can ever wish for.
I look forward to meeting with friends both new and old throughout 2018  

(April 18)

Tracey Hennighan

Tracey H22q Can Do! Tracey Trustee

Hello everyone, my name is Tracey Hennighan, I am married, Mum to Cerys (17), and Ryan (non 22q), and I am the latest member of the trustee team. I am a qualified childcare practitioner with a plethora of experience in my chosen career, in addition I am currently undertaking a degree in Childhood and Youth Studies. I like to help people when I can and have historically helped at the annual Max Appeal events and organised valuable meet ups (which both take lots of work), and now feel I can extend that help to the next level, and help Max Appeal run an amazing Charity, without whom I would have been lost.

I have also undertaken several fundraising events since joining Max Appeal, such as -a toddler-thon, pampered chef evening, an activity fun day, cake sales, cake decorating, raffles, and my latest fundraising event, my twin sister's idea, was decorated baubles for Christmas, which she and I did.

Another fundraising event I participated in, with two 22q mum-friend's, and several more, was the Great North Run. Cerys was my inspiration for doing the Great North Run in 2014, to raise much needed funds for Max Appeal, the thought of what she has endured, and survived, with a smile and a caring nature, gave me the power of mind, over my body, to complete the run. I gained a great sense of accomplishment, for myself for completing it, and for raising money, which helps fund events like 22q at the zoo.

Cerys was diagnosed at 4y 6m, via her submucous cleft palette. She is medically complicated, like lots of our 22q cuties. She has educational difficulties/disabilities, as well as social emotional difficulties and generalised anxiety disorder (plus more, like all of our 22q's), and we have had our fair share of struggles with schools and the Local Authorities including Tribunals. She has done amazingly well in her latest alternative education provision called Red Balloon of the Air, and I can't sing their praises enough.

We focus on Cerys's strengths as much as possible, which are the love of animals, art, Anime, computer games and cooking (with support), and her kindness.

So, from me to you - just keep putting one foot in front of the other, use your support networks, and ask for help, we are human (it's ok to have a crisis, we all have our breaking points), we know our children best, and lots of us will know more about 22q than the doctors, because we live in 24/7. Plus, Max Appeal have provided the consensus document, various other documents and information packs with knowledge to guide us in our journeys with our 22q heroes of all ages. They continuously research, improve and update these, to provide the best support for all of us, which takes an incredible amount of time and work, and I aim to help wherever I can.

(Feb 18)

Sarah Goodyear

SarahHi,

I would just like to briefly introduce myself, then tell you a bit about what is happening here, north of the border.

I have been a trustee for Max Appeal for a couple of years or so now. I live in north aberdeenshire with Simon, my husband, my 3 children, Matthew, 19, Daisy, 14 & Millie, 12, and a variety of animals. Daisy has 22q. She was diagnosed when she was 2 after quite a battle to have her tested. Max Appeal was an invaluable source of support and information at that time. I didn't want other families to experience the battle we did to get Daisy's diagnosis and then any treatments, so I feel very passionate about raising awareness/educating about 22q so was pleased to be able to take up a trustee's role to fulfil this.

Unfortunately, I was diagnosed with breast cancer 18 months ago and so have been having treatment for that, so have been a fairly quiet trustee during this time. I am happy to say though that all treatment is finished now and I am back!!!!! Thank you for all the support that I received during the last year, it really spurred me on.

So, what have I been up to the last couple of months for Max Appeal? Well it's been fairly busy. I enjoyed attending the 22q family day at Glasgow children's hospital, organised by the office for rare diseases. It was good to see so many of you there. Glasgow seems to have a good and ever improving service for 22q, certainly in the awareness raising front.

I am delighted that my local MP, David Duguid, agreed to be a member of the APPG for 22q.11 deletion syndrome and go even further and chair the group. I must say at this stage that I was not the one who first contacted him, but it was Louise Henderson, who then met him & really inspired him to take on this role. You have done a fantastic job, Louise. I am in the process of meetings and discussions with Mr Duguid as to how we can raise awareness, improve services for 22q, both locally and nationally.

Before I was ill, I had started to work through the Max Appeal database of scottish members, to try and see what you were really wanting out of Max Appeal and where you are all located. Many of you had stated that they would like for their affected children to meet others with 22q. I resumed this job after treatment finished and have now organised a few meet ups. Obviously, we cover a large area in scotland, so there may well not be a meet up on your doorstep, but maybe after the initial bigger meetups, you will have met someone closer to you & can organise get togethers amongst yourselves. There are several families with young adults that have 22q so we have organised an afternoon for them to meet up. I appreciate how difficult it is to even get our youngsters out of the house sometimes, never mind expect them to sit and chat to people that they don't know, but thought that if they were involved with sitting around a table, doing an activity, then maybe they would begin to relax, so we have a chocolate workshop for them. I hope that this will be the first of many gatherings for this age group.

The details of all the meet ups are in this ezine, on the facebook page and website. Claire Hennessey managed to secure a grant for these meet ups which is great.

I have many other ideas how we can progress services here in scotland......watch this space. I am always pleased to hear your ideas & views, how we can help you etc, so please don't hesitate to contact me if I can support you at all, sarah@maxappeal.org.uk . Thanks.

(Oct 2017)