Mady’s Story: By Kate Hobaugh

I’m Special Because

Hello!

Let me give you a brief background on Mady and the journey we have come with my beautiful 6-year-old.

I had a wonderful pregnancy and birth, and everything was normal.  My husband and I were ecstatic, first-time parents.  But as Mady grew we slowly started to worry. It took her about 1 hour to drink an ounce of milk, and she wasn’t gaining weight. We spoke with the pediatricians, and they said keep doing what we were doing.

Next came her hip dysplacia, and she was placed in a brace, which ended up lasting over a year.  We started to notice she was not hitting any milestones and her development was not on track.  Around age 1, she started to sit assisted, but her hips were not correcting themselves.  Therapy was started for OT and PT.  Around age 2 she began to crawl, at this point we had seen about every specialist and no one was able to find a diagnosis.

Around age 2.5, Mady began to have seizures, and we spent many nights at Children’s Hospital.  After a major seizure, an MRI was performed and her diagnosis was starting to come to light.  She was diagnosed with periventricular heterotopia, with brain matter loss.  As refreshing as it was to get a diagnosis, this began our journey with getting Mady all the assistance she needs.

Mady is a special needs child who has severe developmental delays.  She is non-verbal with global hypotonia, and needs assistance navigating throughout the day.  She can walk, but her balance is not stable and she is not able to go up and down stairs alone.  Being a mom, they say necessity is the mother of invention, and I could not agree more.  We have adapted most areas around our home for Mady over the years.  Our major problem was her sleeping/bed arrangement.

Transitioning from her crib to a bed was very hard, and we’ve tried many options.  We first tried a bed rail, which did not work because she was able to get partly out of her bed and get stuck.  Next, we took on the insurance company to try and get Mady a safety-type bed. Appeal after appeal and finally denied for the last time, we took things into our own hands. It wasn’t until we found The Safety Sleeper, and worked with a representative, that we found our solution.

We received The Safety Sleeper a few weeks ago, and I just wanted to let you know how extremely happy both Mady and I are with her new bed.  We were able to go through our insurance and it was covered fully.  I am so thankful for your help and the development of this product.  It is such a relief to have a safe place for Mady to sleep every night and we are so excited she will be able to go on her first vacation this summer, with her bed in tow.  I just wanted to personally thank you again for everything.
Mady started school at the Children’s Institute Day school this fall and is making progress developmentally, but she is still non-verbal and still has significant occupational and physical delays and still needs assistance in her daily life.  A big plus for this bed is not only the safety aspect and it being specially made for a child with special needs, but this bed is portable.  We will be able to go on a vacation with Mady.  I will love to take her to the beach, or travel anywhere and stay at a hotel with her. Our goal one day is to make it to Disney world (she loves princesses and 101 Dalmatians) and Mady having a safe place to sleep is one thing we can check off the list.

Thank you, and God Bless,

Adam and Kate Hobaugh