"I would like to take this time to thank Max Appeal because without finding this group I would be feeling so very alone and confused. THANK YOU MAX APPEAL."
"Joshua is 10 next week and has really done well despite numerous operations and more surgery planned later this year. I have seen him grow up and cope with his condition and overcome many of the challenges such children face and the information and support that Max Appeal provided has been invaluable not only to Josh but to his parents. Thanks for all the good work."
"Thank you yet again to Max Appeal for the handbook, gave it to zak's school and they are DiGeorge experts already."
"Thanks again to Max Appeal Zak's educational psychologist said she contacted max appeal with some questions from booklet and wanted info on sources of educational info. She said how helpful you were and big thanks from me because max appeal is keeping me sane through the sen process"
"They (Max Appeal) have been a God send to me through the statement process, especially when you have strangers telling you they know your child better than you do, its reassuring to read others stories on here, it seems to give a bit of empowerment. Just received the draft statement, and he was awarded 25 hours of 1to1 help and that he needed a high level of adult support. The final statement is due at the end of July. Quite a good result at our end, I was expecting it to be a nightmare, but when you are armed with facts it makes it much easier."
"still getting to grasp with everything surrounding DiGeorge, as i only found out i had it aged 30 when i had my little boy who has it too. Your facebook page (Max Appeal - The Official group) has been a life safer thanks for all your hard work."
"Thank you. This board (Max Appeal - The Official Group on Facebook) is my lifeline" x Justine
"...we were lucky. We had 115 days with Max, and saw him smile, and know who he was, and we learned about ourselves and the people around us..."
'I have had the opportunity to look through the Max Appeal handbook, and was extremely impressed with both content and accuracy of the information..... It is certainly a major boost for what is becoming a fairly large patient population, to have such an active and well organised charity in the region.'
Dr Paul Miller, Consultant paediatric Cardiologist, Birmingham Children's Hospital
'...I am extremely impressed by both your handbook and the work your team have achieved so far. If there is anything I can do to help I would be delighted to do so.'
Martin J.Elliott, Consultant Cardiothoracic Surgeon, Great Ormond Street Hospital, London
'Thank you so much for sending us your materials from Max Appeal! You are doing a terrific job and I'm sure the families are gaining a tremendous amount of insight into the deletion, as well as, emotional support from your publications. I also applaud your interests in educating professionals about the deletion. This is really a "grassroots" effort which I'm sure will pay off in the long run. Could you please tell us how we can remain on your mailing list and also let us know if there is anything we can do to help you. We would be delighted to help in any way we can!'
Donna M. McDonald-McGinn, M.S., C.G.C., The Children's Hospital of Philadelphia
"Our son was diagnosed with 22q whilst only 20 weeks into the pregnancy we were very lucky to have been given that time to prepare. We looked at your site then and found out all the info which we felt would help. He's now 8 months old and the most adorable baby you could ever wish to meet. Thanks to your site and the information for helping us. We have kept away since his birth so that we could discover our boy as an individual with his own character but now we realise we actually need your advice and experience."
The most humongous Thank You to lovely Claire Hennessey from Max Appeal for supporting me today at a school meeting. Claire lives in Bristol, I live in Luton.. poor Claire has ONLY just got home from travelling... 9.50pm! Our meeting was at 1.30pm! Claire made 22q REAL, in that I wasn't just 'a parent' droning on about something the school simply heard as a word.. Claire, your passion for Max Appeal and your drive has touched me.. a huge thank you ... Must have been a 12 hour day easy!!! I really needed you xx '
Another example of how Max appeal makes a difference to our 22q families.
Dear Dr Kumararatne,
I am currently caring for a baby girl with a recent diagnosis of 22q11 deletion.
I have used the article 'towards a safety net for management of 22q11.2 deletion syndrome: guidelines for our times', published in the Eur J Pediatr to guide my management so far.
I'd like to thank and congratulate you and your co-authors on the review article. It is an excellent piece of work and has proved invaluable to me in dealing effectively with this patient.
Dr David Booth
Consultant Neonatologist | Neonatal Intensive Care Unit
Clinical Director | Paediatrics
Honorary Senior Lecturer | Norwich Medical School
We have been waiting for amnio and results, which have confirmed no chromosome issues, just heart problems. So Emma is going ahead and is quite delighted even though the heart problems are serious. Please may I thank you so so much for the help and counsel you gave me, and for how you responded when things were so uncertain and Emma was in such turmoil. I will never forget your kindness. With deep gratitude, Karen