05/01/2012 22:36:25
mummypoohbear
Posts: 21
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Jan 24th is wear purple for moebuis syndrome and help raise awareness. I shall be wearing it and hope others can join in.
Abby is having a fun raising day on 29th Jan and if any one would like to come along please contact Abby through facebook.
Details are below. Lets spread the word and help raise awareness.
moebiusfriends2@groups.facebook.com
Rileys Charity Event for Moebius Awareness!
Public event · By Abby Rileys Mummy Ryan
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When
Sunday, 29 January 2012
Time
13:00 until 17:00
Description
On 29th January i will be holding a charity event for Riley to raise money for Moebius Syndrome Awareness Day! As you all know this is a disability that Riley has and it is very rare so they cant yet start research until they reach their £250,000 target
Moebius syndrome is a rare neurological disorder that is present at birth. It primarily affects the 6th and 7th cranial nerves, leaving those with the condition unable to move their faces (they can’t smile, frown, suck, grimace or blink their eyes) and unable to move their eyes laterally.
Other cranial nerves may be affected, especially the 3rd, 4th, 5th, 9th, 10th and 12th. There may be skeletal involvement causing hand/feet anomalies and/or club feet. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, and weak upper body strength may also be present. Approximately 30% of children with Moebius syndrome are on the autism spectrum.
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06/08/2011 23:25:47
Sxmorris
Posts: 2
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Sxmorris wrote:
abby0994 wrote: Hi Pauline, My name is abby ryan, i am 16 and my son Riley is 7 months old with moebius syndrome. This is all very new to me as we have only found out in the past couple of weeks and i have joined the moebius research chat forum which really helps, are you on there? Just intrigued as to what you said about helping your son to smile as it breaks my heart when i hear Riley laughing but cant see his smiling face, can you let me know some information as to how i can help him?
Many thanks
Abby x
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06/08/2011 23:25:00
Sxmorris
Posts: 2
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abby0994 wrote:
Hi Pauline, My name is abby ryan, i am 16 and my son Riley is 7 months old with moebius syndrome. This is all very new to me as we have only found out in the past couple of weeks and i have joined the moebius research chat forum which really helps, are you on there? Just intrigued as to what you said about helping your son to smile as it breaks my heart when i hear Riley laughing but cant see his smiling face, can you let me know some information as to how i can help him?
Many thanks
Abby x
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05/08/2011 10:57:03
NaoTuc
Posts: 3
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Yes, hopefully with them doing the show, it will raise awareness of Moebius. Here's to a hopeful future for Riley!
Naomi.
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04/08/2011 21:52:32
mummypoohbear
Posts: 21
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I agree Naomi and as it was the first disabled baby on the show i wouldn't be surprised and it would also be good if people contacted bbc3 and let them have your comments as i think it will be the most watched one of the series. I will update when i see Riley and give progress reports when ever Abby wishes.
You never know you may see her on the Moebuis website as she often pops on.
Keep them peeled.
Pauline
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04/08/2011 20:17:22
NaoTuc
Posts: 3
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If they did a follow-up, then it would be nice to see Riley a bit older and to see how she is coping. I will have a look on Facebook for the group. Anyway, glad to hear all is going well. How about you?
Naomi x
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03/08/2011 21:11:55
mummypoohbear
Posts: 21
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Hi Naomi
Thankyou for watching the program and for your comments.
Abby doing well and is doing her apprenceship in hairdressing. Riley is just lovely and so happy, i know he brings lots of joy to everyone he meets and i think he knows it lol
I will let Abby know you left a message on here and i will keep you all updated when i can.
Abby doing a fantastic job raising awareness and if you go on facebook there is a support group where you can leave comments and offer any advise and it doesnt always have to be about Moebuis, some times we all have the same problems and its just nice to find someone else who has some advice to help.
Keep your eyes peeled as well as i know Abby will be do all she can to promote Moebuis and you never know Underage and pregnant may do a followup in the future. Well here's hoping.
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02/08/2011 21:40:10
NaoTuc
Posts: 3
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Hi, I'm Naomi. I have just watched Underage and Pregnant on BBC iPlayer and saw the episode about Abby and Riley. Was really upset for Abby, and even started crying because she has been through so much. Then when Martin came on was happy for him that he had proved the doctor's wrong. I am not actually a sufferer of Moebuis, but just wanted to leave a post to say how much I feel towards Riley. Bless him! 
Naomi x
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18/07/2011 20:23:07
mummypoohbear
Posts: 21
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Well we were all on Underage and Pregnant on bbc3 you can watch it on bbc3 iplayer its called Abby's story.
The feedback has been fantastic with other families coming forward. The moebuis group on facebook http://www.facebook.com/#!/groups/moebiusfriends2?ap=1 has offered lots of advice to families from their own experiences. Well done to Abby for raising awareness and for starting your hair dressing apprenticeship. Riley is a bright happy little boy with a wonderful future ahead of him.
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04/07/2011 18:42:59
mummypoohbear
Posts: 21
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Just heard that Abby and Riley will be on This morning on Friday not wednesday so sorry for that and you can read their story in this weeks Closer mag.
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03/07/2011 21:18:27
mummypoohbear
Posts: 21
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Well i have just heard from Abby's mum Lara that Abby and Riley will be on television on BBC3 underage and pregnant from the 11th July. Martin and I were filmed for the program. It is the first disabled baby so they are promoting Moebuis syndrome and they will also be on This morning on wednesday 6th July so keep them pealed.
This a rare syndrome and raising awareness helps bring families together to share information and support each other.
Well done to Abby for being brave enough to show everyone how brilliantly she copes though some tough challenges.
Riley such a happy baby who has just had his 1st birthday so happy birthday Riley hugs x
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10/05/2011 16:21:34
mummypoohbear
Posts: 21
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Well my son Martin and I visited Abby and Riley at her home with her family.
During our visit we discussed many of the issues that Abby has to face in the future ie school, teething problem, speech etc.
We also spoke about the changes since the internet which wasn't the case when Martin was growing up.
Abby is now a member of the facebook support group where she can interact with members day or night.
I lent her the books that Martin is in which shows that people live near normal lives with support, which i hope has been a help to Abby.
I shall be keeping in touch with Abby and Riley and will keep you updated as i know there is a lot going on for Abby and Riley which i hope i can soon tell you all about, so watch this space.
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15/02/2011 13:44:13
mummypoohbear
Posts: 21
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Hi Abby
First of all congraduations on having Riley he will bring you such joy.
It is also very scary having a baby at your age and having moebuis syndrome is a lot to take in. Martin was my 3rd baby so i know how difficuit it can be, all the hospital appointments etc can be confusing, but im here to help if i can.
The main thing for Riley is to have a lovely mum to help him, love and feed him and i hope you have family to help out as i remember mine found it difficult to accept in the beginning. I live in Southampton and i am in contact with some members on facebook with links to the various moebuis sites. You can add me on p_eames@hotmail.co.uk. If you do that i will send in a private message my contact telephone no.
The one thing i would say if anyone offers any help ie social services etc take it and work with them as they are there to help support families and point you in the right direction as to the support groups in your area. I use to foster children as well so i am use to the proceedures and how to make them work. In Southampton we have the opportunity group which is a playgroup for disabled children and their families, this is important as other children in the family sometimes feel left out. These groups involve everyone in the family, they also have information on the benifits you will be entitled to such as dla and later on mobility if required.
I hope you have taken some advise and claiming the correct benifits for yourself and Riley.
When i find out where you live i will be able to see if there is anyone local to you that you can either email telephone or visit. email made life so much easier as when i had Martin we use to just write and then wait for replys everything is much more instant now.
Has Riley any other complications? Martin spent much on his life in splints for his hands feet legs and spinal brace with has helped in the long term as he lives a full life now and has a flat nearby so i see him almost everyday. Today he had his two sons Alfie aged 4 and Aj aged 2 so he can give you lots of advice on having children and the terrible twos lol. Much of it is learning and always remember to find some time for just you to chill. Time with friends etc as its very important that you find time to relax and have fun. This helps you cope with everything and give Riley a happy mum.
Well Abby i look forward to hearing from you either by my email or facebook then you can tell me all about Riley and yourself and thankyou for sharing your story on here.
Pauline
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15/02/2011 10:11:26
abby0994
Posts: 1
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Hi Pauline, My name is abby ryan, i am 16 and my son Riley is 7 months old with moebius syndrome. This is all very new to me as we have only found out in the past couple of weeks and i have joined the moebius research chat forum which really helps, are you on there? Just intrigued as to what you said about helping your son to smile as it breaks my heart when i hear Riley laughing but cant see his smiling face, can you let me know some information as to how i can help him?
Many thanks
Abby x
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07/02/2011 13:54:19
sarah
Administrator
Posts: 57
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Hi I'm Pauline, a Southampton Resident and Hampshire Area Panel member. I thought you may be interested to know about Moebius Syndrome also know as 'the children that can’t smile'.
Moebius Syndrome is a rare neurological disorder that is so rare that there are only around 200 cases in the UK. The illness causes facial paralysis which is why it got its name ‘the children that can‘t smile‘ as they have no facial expression and can not suck, frown and in some cases blink. Sufferers may also have limb and chest wall abnormalities and can also have secondary conditions.
My son Martin has Moebius syndrome, Arthrogyposis and Spina Bifida Acculta. His main problem is that he doesn’t feel pain and so is unable to tell when he has injured himself. He has all his limbs but has 20% restriction of his joints and the cold weather causes stiffness which causes them to freeze at any time. Martin lives a normal life with support from his family and is a dad of two sons. It takes him longer to do things but he manages.
In August, some of the families got together in Birmingham. It was the first meeting in at least 10 years. For me it was great to see how others have grown up and to meet new families. We all shared our experiences; mine was the battery toothbrush which I used to stimulate Martin’s facial nerves so that he can now smile in his own way. It was an informal meeting giving others the chance to see how each other coped and to know there are others like them, facing the same fears of growing up. We finished the meeting in the bowling alley with the families challenging each other and making firm friendships.
The internet has brought families together all over the globe and many of us use social websites such as Facebook. It has opened up a whole new world. We are now in touch with other countries and there is a research group in Scotland. Without the internet these things would not be possible. There are also two books written by Jonathan Cole in which Martin is featured in but under the name Duncan. They are ‘About face’ and ‘The Invisible Smile’.
It’s up to the families to raise awareness and with the internet we can now do that. Let me know if you have any thoughts.
Pauline
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