interview | Lessons from my daughter

In our daily life, at home, there is not another person with cri du chat syndrome.

I am so happy for Facebook and the community I have found on-line of families who all have a loved one with cri du chat syndrome.

So today, we talk with Bonita.

Let’s meet Rachel!

1. Can you tell me about your family?

Rachel has an older brother almost 42, a sister who is almost 38 and another sister, Haleigh, almost 23 years old. Rachel lives at home with her dad and I, Haleigh, and our dog, Tally Ho.

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

Our daughter, Rachel was born 10 weeks premature weighing 2 pounds 11ounces. She is a healthy young lady turning 22 in August and is about to graduate from a Transition program that she has enjoyed very much.

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

She was diagnosed with Cri-du-Chat Syndrome about 2 months after she was born and still in the hospital. She started therapy and early intervention programs soon after she came home. Of course she was delayed and used a walker, wore braces on both feet for several years, but she is doing fine now.

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

Rachel is doing well in her reading program in her class and is very outgoing. She loves music, singing, she has a large vocabulary, loves animals and sports.

The Chicago Blackhawks, Bulls and Cubs are her favorite teams.

She was crowned Homecoming Queen at her Transition program dance and also participates in Special Olympics Bowling.

She also loves going to church each week and everyone there treats her so sweetly.

When the doctors first told us her diagnosis they gave us a very bleak sounding future and said we should put her in an institution. It’s amazing how far she has come and how many lives she has touched.

There are times she makes us crazy of course, but all in all, she has far surpassed our expectations, never dampening our hopes.

5. What’s next?

Soon Rachel will become our traveling companion as she exits her program and my husband gets ready to retire from his job. We will all continue our adventures together as long as we are able! We’re blessed to have our older children and their families close by so Rachel is able to spend a lot of time with her nieces and nephews, her grandmother and aunts, uncles and cousins.

She has a great circle of loved ones around her which is a comfort to us. Rachel continues to grow in her knowledge and ability and we believe that as long as we expose her to new experiences she will continue to excel.

Thank you Bonita!

I love the picture of Rachel, she looks really happy and I’m sure Emily would love a tiara like that one!

It’s the time again to introduce you to another family.

Today we meet Etta and her grandson Elijah.

1. Can you tell me about your family?

Our family consists of Michael (my husband), myself, three sons and Beth(our daughter-Elijah’s mom) 9 grandchildren. Beth, Elijah, and Jedidiah live with us.

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

Elijah is 2yr. We noticed at 8 months old that he was still like an infant. He was not rolling over, showing no signs of sitting, nor anything an 8 month old should be doing. His brother Jedidiah was having therapy with babies can’t wait and we asked them about his behavior. We were sent for diagnostic genetic testing. We were told he was severe cri cu chat. Two weeks later, he rolled over, sat up, and crawled all in the same Week. He can walk but does not yet talk.

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

He is now in occupational therapy and speech therapy. He is improving more and more daily!

Here he is!