YEEP Group – 22q11ireland.org

22q Young Experts by Experience Panel (YEEP): About Sarah

“Hi, my name is Sarah Fitzpatrick I was diagnosed with de-gorge syndrome when I was 3. I also have scoliosis. I have 22q11 which I’m missing my 22nd chromosome.

I joined a group called Yeep group and I have long life friends I’ve met amazing people along the way who are just like me. I’ve always hated school had been bullied.

I’m now in national learning network and met more new amazing friends and my boyfriend who put up with me. I’ve always struggled to start conversations and how to socialize because I’m very shy person. I’m starting to come out of my shell every since I met these amazing friends of mine who have helped me.

I really struggle with school and it takes me long to learn things more then others but I did go in and put my head down to do the work did my leaving cert and got to where I am today. Even though I hated school I still had to go in and finish it.

It has been really tough but I got through it. I also really struggled to keep friends I have lost some along the way don’t think they really understood me but I am really am happy with myself and blocked those people who have brought me down.

Also, my mam has helped me through so much she is my best friend and always has been there with me I also wouldn’t be where I am today without my mam. I also can’t forget about my dad and my sister who also have been there for me x. This is my story.”

22q Young Experts by Experience Panel (YEEP): About Siofra

“Hi, my name is Siofra. When I was born I was diagnosed with 22q11. Deletion syndrome. I find learning hard for me and have a low immune system.

I completed a level 5 course in Ballyfermot college called office administering. Which was hard but I got through it. At the moment I’m currently studying a medical secretary course, getting a lot of assignments but it keeps me going through these tough times.

I also play sports. I play camogie and Gaelic football. But due to Covid all sports are cancelled which is annoying. But now I’m running 5k x3 times a week. My best time is 28 minutes, on average it would be 30 minutes. I picked this up during lockdown.

I also get loads of support from the YEEP group I made so many good friends from there.”

22q Young Experts by Experience Panel (YEEP): About Niamh

Hello, my name is Niamh. I am 27 years of age. I have a great family who support me and a great boyfriend who supports me too. I didn’t like 22q11 at the start but then I said life is too short so if people don’t like you for you, well then they are missing out!

I live with my mam and my dog Prince. Sadly and unexpectedly my Daddy passed away this year, we were all very sad. I also have a boyfriend who I can my best friend. We are together for four years now. I recently started a course, it’s online at the moment like everyone else’s. I go in 2 days a week and it will be 3 days a week when we get our new building. I have made two new friends already on the course, one is Irish and one is Chinese, they are lovely people and kind.

My hobbies are online shopping, even before Covid 19 came to the world! I love technology. I am hoping one day that I will have a job and a car and a family of my own. I love to go on a walk with my headphone to listen to music that calms me down.”

22q Young Experts by Experience Panel (YEEP): About Aine

Kids with 22q need to believe in themselves and they need to believe in their dreams, their goals. They need to believe that they can have a life like everyone else, get married, have kids and have a job. They need to believe in themselves. They need to believe that they can do well in school – they can go to college and get an education.

Parents need to believe in their kids, need to respect their kids. They need to accept the fact that their child has 22q or their child won’t be able to live their life. When the parents accept it the child will too. Most number one thing to do – accept what you have. You do that and your life will change.

22q Young Experts by Experience Panel (YEEP): About Emma

“My name is Emma Brady and I am 34 years old. I am from Killarney Co Kerry. I am the oldest of 3, I have a younger brother and sister. I also have 2 dogs.

I live at home with my mam and dad. I work 4 days a week as a Montessori teacher in a small setting in Killarney. I also drive and have my own car.

I have completed many courses including social studies and healthcare and I also completed the ordinary leaving certificate in 2004.

I enjoy walking, swimming and photography. I have been a volunteer with my local special Olympics club for 15 years.

I am a member of the Yeep group and I have gained valuable support and knowledge and have learned to accept that I have 22q11 deletion.”

22q Young Experts by Experience Panel (YEEP): About Amy

“Hi, my name is Amy. I am 25 years old. I was diagnosed with 22q at the age of 10. I had open-heart surgery at 3. I find it difficult to socialize and found it very hard to make friends when I was younger and sometimes still do! I struggled through school and was a very quiet person. I really didn’t like maths I could never work with numbers I still have to use a calculator for the simple things! I found it very hard to study in secondary school I couldn’t concentrate it would go in one ear and out the other very quickly.

I did enough to pass my Leaving cert and went on to study tv and film fetac level 5. I didn’t complete it as it wasn’t for me. I then did Travel and tourism level 5 and I loved it as I love travelling. I have been to Australia 4 times and I went flew once over on my own. I prefer solo travelling a lot more.

I am now looking for a job I am working with a brilliant service called employability in Cork where I have a job coach and he helps me with my CV and interview skills. I have found it very good so far and have had two meetings.

I am also part of the YEEP group and I love being part as I know I am not alone and I can talk to the other girls for support. I wish I had something like that when I was younger to help me understand it more!! I have my good days and bad days as everyone does but you just have to push through and know you are not alone with it.”

YEEP hopes and vision for the new website

Amy (Cork): “My hope for the website is that I would like it to be a safe space for people, in particular for young people with 22q11,2 Deletion Syndrome, to find more information and to connect with others in Ireland who also have 22q.”

Emma (Kerry): “I would like to see the website as a way of CONNECTING those with 22q11 deletion, families, friends and supporters. Being able to CONNECT with others is so valuable and it will hopefully help the person feel like they are not alone.”

Aine (Dublin): “My vision for our new website would be that the children and adults are educated about 22q and when they see our success stories that they will be inspired to go after their dreams.”

Niamh (Dublin): “I hope that the new website will help young and adult people to accept 22q11 and talk about it with your family and friends.”

Siofra (Kildare): “I hope this website would let people with 22q know it’s okay to be who you are.”

Sarah (Portlaoise): “I really do hope that this new website will really help people understand what it is we have so my friends, teachers and family members can understand more. And have them on our website so they can understand it.”

22q11 and Low Muscle Tone

Is one of my biggest issues with 22q. Mammy finds it hard to believe that I can pick up a 10-pound bowling ball and roll it down the lane. Mammy is also amazed at me when I able to hit my spares. Many moons ago I wouldn’t be able to focus at hitting the spares. Part of 22q is we find it difficult to focus on a task at hand.

Every game that mam attends she does be so amazed at me. Yes, mam, I may have low muscle tone but it doesn’t stop me from picking up my bowling ball and learning about the game. 22q is only a name of a syndrome mam it’s not the name of me.

When I compete in competitions my low muscle tone gets stronger and my focus gets better. Now it’s better than ever cos I have a coach who is working with me. That makes a huge impact on my game. Ps, I love this photo Limerick games 2014 where I won gold and silver.