Raising Awareness

Raising awareness is something we take seriously. Over the past year we have walked and raised money for prematurity. Shared our story and some heartbreaking statistics! We are beyond thankful for the March of Dimes and all they do for prematurity and as a family we will continue to march on each year.

It may seem that we talk about Maelee having CP all the time or that we share our story a lot. We do share her story, her accomplishments, and all we do for her to raise awareness. She has Mild Left Hemiplegic CP, many would not know she has CP by looking at her but that's the point, it has to be talked about. This is something she will have forever, there is no cure. And the prevalence of this disorder is only increasing in the United States each year. It is our responsibility to educate and advocate.

Raising awareness for Cerebral Palsy is a passion of ours. This disorder is something that is not talked about. Many think unless you are in a wheelchair is doesn't affect your life.....huge myth.  

• Cerebral Palsy is the most common motor disability in children affecting over 800,000 Americans, 1 in 303 children, and estimated more than 17,000,000 people worldwide. 

There is no federal funding dedicated to research to helping find a cure or better treatments for CP.  I was in shock to think that so many children suffer from this disorder, more than childhood cancer yet we aren't doing anything as a country to fund and help these families. 

"No dedicated line item funding exists for Cerebral Palsy, despite the fact it is the most common motor disability in childhood affecting over 800,000 Americans, with higher prevalence than Muscular Dystrophy, Parkinson’s Disease, Childhood Cancer, Hearing and Vision loss, Spina Bifida, Hemophilia, Fetal Alcohol Syndrome or Cystic Fibrosis." Source: CDC; National Institute of Neurological Disorders & Stroke (NINDS/NIH) 

Here is a link to Reachingforthestars.org Proposal they sent to the government for funding, filled with lots of statistics and data. 

Reaching for the Stars Proposal

What we do know is that therapy is the best treatment for this disorder at the time. That is why Maelee spends her week in PT, OT, and CBRS. This is why we do therapy at home even when there is no one around we are doing therapy. Maelee is allowed to be a toddler but we have to keep working with her on her strength, balance, coordination, fine motor skills, and to keep using her left side. 

I hope and pray that we will continue to raise awareness and that one day more will be known about this disorder that has so many unanswered questions at this time. I know we are doing everything for Maelee that we can, some may think it's extreme, or too much. Those people do not understand, they do not live in our world and that is ok. I ask this question: If it was your child with a disorder that couldn't be cured, Wouldn't you fight like hell to give them every treatment possible that could or may help them!? I know the answer would be yes!  

Please google and do research regarding awareness, there are walks all around the country. Places to donate and organizations you can purchase little gifts from online. Talk to someone about this disorder, share the statistics. And if someone you love has CP you owe it to them to share the conversation with others. Place a sticker on your car to start a conversation, a post on your Facebook wall, or just a post on a blog. So many ways to spread awareness, yet no one is wanting to do it. 

I am Maelee's Momma. She is a beautiful little toddler with reddish blond hair, blue eyes, and a personality that will make you laugh the moment you meet her. She is a little mommy to her babies, loves to sing and dance, and can't get enough of Sofia the First. She would rather never touch finger paints, can't stand shoes or socks, and is not a fan of any textures foods. Maelee likes to "talk" on the phone and doesn't mind "telling" us how she is feeling, although we don't understand. She is amazing but with that Maelee has CP, SPD, PLMD, and RLS. None of these define her or make her who she is but they are apart of her. She will always have them, these abbreviations will be with her forever and we can't change that but we can share them with others and EDUCATE.