A Family Affair

  1. August 10th 2010 / 3 Comments

My name is, Amanda. I am 24 years old and worked at Ottobock for about 3 years. I loved my job because I knew I was helping someone everyday! But one day, I realized just how much Ottobock really does change the lives of people in the community.  I became one of those people when my twin daughters, Faith & Joy were born very premature and were diagnosed with Cerebral Palsy.

Here is our story…

Amanda, Faith and Joy.

Pregnant at 23 weeks and 1 day, I found myself in labour!! Scared as no one could ever imagine, I had no idea what would happen to my twin daughters. The doctors told me, they only had a 4% chance each to live. They also told me the complications they may have if they did live. Eye and hearing problems, learning disabilities, Cerebral Palsy, ADD, the list went on. I was even asked the heart wrenching question, “When they are delivered, do you want them to be revived?” I couldn’t believe my ears! I was told their lungs were just too weak to be able to breathe on their own and the girls would not be able to breathe once delivered. I told them to do whatever they had to do to keep my babies in this world! The doctors were doing everything they could to stop my contractions, but it just was not working.

At 23 weeks and 5 days, May 3rd, 2009, I gave birth to my daughters, Faith Ann & Joy Aurillia. Faith weighed 1.6 lbs and Joy weighed 1.7 lbs. My daughters endured painful experiences and went through horrifying surgeries to stay alive. At 27 and 28 days old, weighing just under 2 lbs each, my daughters were wheeled in for heart surgery to correct a heart murmur. They were uncertain if their tiny bodies would be able to endure such a horrifying surgery, but they did it!

For the remaining 5 months they had lung haemorrhages, brain haemorrhages, infections, once again the list goes on and on. But thankfully, to everyone’s surprise, my daughters both pulled through it all.

After almost 6 months in the hospital, on October 16th, 2009, I brought my girls home!! My daughter, Joy just couldn’t handle not having the extra oxygen so she had to be brought home on an oxygen tank. However, one week before Christmas, the oxygen was discontinued and we were free of any and all cords, wires and tubes.

At this time, I could tell something really was not right with Joy. I mean, I knew developmentally they would be fairly behind, but Joy just wasn’t doing anything but eating and sleeping. She couldn’t even hold her head up yet and she was almost 6 months corrected. Her movements were very shaky and jittery, I knew something was up. I thought, well in mid-January, they will be seeing an Occupational Therapist once a week, so that will probably help her.

Therapy started and two months went by and I wasn’t seeing much of an improvement at all. March came around and we had an appointment with the Neonatologist and Physiotherapist that the girls were looked after while in the hospital. Well, I got quite a shock, “Joy has Cerebral Palsy”. They said from the looks of it she had Paraplegia, meaning the CP was affecting her entire body. I knew it was a possibility, but they were both so strong I thought they made it through everything there was to go through. I couldn’t believe it, I was speechless.  Devastated!

Then, the Kimba came to mind! As I said, I worked at Ottobock Canada for 3 years before I went into labour and knew it was one amazing piece of equipment and it just might help her. She had a lot of feeding and seating issues and I thought why not see if we can get one. I mentioned it to them and they said that was exactly what they had in mind.

I didn’t know much about CP at all. So I began researching it and realized there is a lot out there that can help her, this might be ok. After all, she is alive and healthy and as long as I have her here, I will take her any way I can get her! Toronto Orthopaedic had a loaner Kimba sent out to me for her, so we could try it out and see how it went. It was incredible! She wasn’t spitting out half as much food as she used to and she looked quite comfortable sitting in it. She seemed so relaxed; she wasn’t so stiff and just looked so relaxed. It was perfect!

Then, I got more shocking news! In June, my other daughter, Faith was diagnosed with CP as well! They said she looked like she had Hemiplegia, meaning just one side of her body was affected. Once again, all I could think was, she is alive and healthy and as long as I have her here, I will take her any way I can get her. Then we were presented with the Kimba Tandem Stroller! I was so excited and could not wait until we got it. Faith also had seating problems. At 16 months old, 12 months corrected, she also could not sit on her own, she was pivoting, but could not crawl. I received my Kimba Tandem just last week, and the girls love it! I love how they can sit facing each other. They love to look at one another. They were so happy and both had huge smiles on their faces when I put them in their new stroller.

I want to thank Ottobock for creating a piece of equipment catered to the needs of my girls. Having a tandem stroller for twins with disabilities is incredible and not something you can find from very many others. It is an amazing thing that Ottobock does for people. Working there brought joy to my life everyday because I knew I was helping someone with every box I packed and every phone call I received. It is so rewarding to have been a part of this company and in turn they now have helped my daughters. A big thank you to each and every one of you that work at Ottobock!

Love always,

Amanda, Roy, Faith & Joy XOXO

3 Responses to A Family Affair


  1. Amanda says:

    What a great story! I also have twins, Faith & Joy, they are 1 year corrected. They both have been diagnosed with CP. Joy is more severe than Faith but I’m sure as they get older they will help eachother as well. Good luck!!!

  2. amanda m. says:

    hi i love otto bock too! while i have 10 month old twins they are typical. my 5yr & 3yr old are special needs-we have a double stroller through otto bock-we wish you well:)

    • ann marie johnstone says:

      i would love this to be made in a bigger size as i have a patron special needs pedatrician buggy and would be perfect but this says up to 5 or 18kg i like the sn buggy better than his wheelchair which is very heavy but with the otto bock it would work better, is there a bigger size anyone ?

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