Interview | Lessons from my daughter

Over the weeks, my interviews have been about some families we’ve meant and others that we haven’t. This one is about a young man who without saying anything captured my daughter’s interest.

Look at them when they met in 2013!

Hi Tammy!

Thank you for taking the time to do this!

1. Can you tell me about your family?

My husband and I have known each other since we were in Jr High School and have been together 27 years and married soon to be 25. Allan is our oldest and will turn 25 in June and he has 2 younger siblings a sister 22 and a brother 11 years old. Allan and his sister share a very close bond with one another and he adores her and she him. As a parent it really is wonderful to see. We are a very close family. My husband has been very supportive from day 1 with Allan’s diagnosis and has always been a hands on dad. Our family does not see Allan as having a disability when we see him we just think of him as Allan, And we never assume he cannot do something and we include him in everything we do.

2. Tell me about your loved one with cri du chat syndrome?

Allan is a very happy guy. He loves to laugh and joke around. He always has a smile on his face. Allan loves sports of all kinds. He is a huge fan of Football, Baseball and basketball. He loves to play basketball and always has since he was a young kid. He played on his first special league basketball this past season and really had a blast and did a great job. We were very proud. Allan attended his school from age 3 and left as he aged out at 22 and it was a very positive experience. Soon after he started his Adult Day Program which took some time adjusting to after the loss of his grandma and having to get use to a whole new school and staff after 19 years at 1 school. So it was a challenge in the beginning but he has adjusted very well lately. Allan has always loved his sleep from an early age. And we count our blessings in regards to that. You will catch him napping often.

3. Tell me about doctor appointment, therapies or school?

Allan never really had to see the Dr much over the years he generally does his annual physical and blood work outside of that he is a very healthy guy. He does suffer allergies from time to time but that is about it. Growing up Allan attended all the normal O/T.P/T and private speech sessions as well as got the services through the school district. And as he got to be older we discontinued the O/T AND p/T and concentrated more on the daily living skills and work programs. Allan does attend a work program at this time through his adult day program and is doing very well as long as his coach is there to assist him .

4. Tell me a success story.

Wow its so hard to think of just one success story because in our eyes Allans entire life has been a huge success story and he has beaten all the odds that were given to us when he was diagnosed after birth. Allan is very independent at home and able to do quite a bit for himselfand that is a huge milestone to us.

5. What else would you like the world to know?

As a parent of a older adult son I would want all the new parents of newly diagnosed sons/daughters to know that there is life after the diagnosis. My biggest regret was when I look back and wish I had not let myself be consumed with the diagnosis the first year. I had kind of a pity party. I was afraid of the future. I concentrated so much on what the books said Allan would do or be that it made me depressed. Luckily I had a great support system and I finally told myself that we were going to do everything possible to ensure he could grow up to be the best he could possibly be. Allan would grow up having a family whom supported him and loved him and believed in him. I knew we had to believe in him in order for him to believe in himself and want to have the will to achieve. And so I stopped having the poor pity party and stopped asking why me? Why Allan? And that is when I was able to finally start finding some normalcy through the diagnosis and after the diagnosis. And now here it is almost 25 years later and I am so very proud of my son. We celebrate all his birthday milestones doing what we feel someone that age would do. Such as when he turned 21 we took him to Las Vegas for a week he gambled he saw all the sights he went dancing . Or when he had his special graduation we rented him a limousine to celebrate the occasion and went to dinner and he had the time of his life. So I do not dwell on the things he will miss out on because as long as I am alive he will not miss out on life. I take him traveling he attends concerts we enjoy life to the fullest. And at the end of the day it makes our family as normal as it possibly can be.

Thank you so much Tammy for taking the time to do this!

Hope to see you and your family again in the near future!

When we got Emily’s diagnosis of Cri du chat syndrome, we were told everything she would never do. Walk, talk, feed herself, recognize us, show emotions…

So many things…. Such an overwhelming feeling of sadness.

When babies are diagnosed today, parents are still receiving a similar “talk” from their doctor.

In today’s world, parents of newly diagnosed babies can find a supportive community just by searching Facebook. 🙂

Not long after they find us, they are greeted by Rachel…

Rachel is that one person who instantly lift some of the sadness away…

Today, I am introducing to Rachel. She is an inspiration to all of us and I am sure you will be inspired too.

1. Can you tell me about your family?

I am the oldest of 3 children but then I have 2 stepsisters and 2 stepbrothers. David and Rebecca (siblings) Hannah and Abby (stepsisters) and John and William (stepbrothers) my parents names are Simon and Kathryn and my stepdad’s name is Robert (Robbie) and my stepmum’s name is Andrea.

2. Can you tell me about yourself?

I live in New Zealand on the West Coast of the North Island in a city called Wanganui. I have a mild verison of CDC called mosaicism. I collect elephants, love playing on my gameboy especially playing pokemon games. I won Cri Du Chat superhero of the year for 2014.

3. Can you tell me what a mosaic is?

A mosaic is a person who has some of their cells affected by Cri Du Chat so 30% of my blood cells are affected by Cri Du Chat so not all of my blood cells are affected but don’t know the rest of the percentages throughout my body because they can’t test for those cells. My deletion is 13.1 so which means I am missing 90% of my 5P arm.

4. Can you please tell me a success story?

I live independently away from my parents in a house of my own with a ginger and white cat called Fanta. I volunteer at the YMCA where I help run a playgroup on Tuesday mornings and then I help run a programme called Boogie Buddies it is a fitness programme for 2-5 year olds.

5. What else would you like the world to know?

I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, a girlfriend, an inspiration, a role model, an adult, was named Cri Du Chat superhero of the year for 2014, I am a cook and a member of society, a cousin, a volunteer and a light in this world, a fur mama to Fanta. I am all of these things and so much more. I have CRI DU CHAT SYNDROME!!!

Thank you Rachel!

You are giving a voice to many of our kids and for that you are a true superhero!