If you are a parent, chances are you have the same hopes and dreams for your child as I do…be/stay healthy, do well in school, make/maintain good friendships, go to a good college, find your passions and pursue them, make a decent living, meet that special someone, have a family, enjoy life to the fullest….etc, etc, etc…
But what if it wasn’t that easy? What if your the hopes and dreams you had for your child were much more basic….something like…. eat without aid, walk without aid, have the ability to communicate, make it through another surgery, endure no pain, ridicule or pity….
This is the harsh reality of millions of parents who have children with disabilities. Life is anything but “normal”. The normal these people once knew has been replaced with a long, difficult journey in which the destination is unclear.
Meet Danielle. She is a beautiful 8 year old who resides in NY with her parents. She is probably one of the happiest children you will ever meet. She loves to smile, loves to laugh, enjoys horseback riding, swimming and loves to hear stories and secrets more than anything!
Danielle also has Mucolipidosis Type IV (ML4). ML4 is a genetic disease for which there currently is no cure. You probably have never heard of ML4…that is because M4 is EXTREMELY RARE. When Danielle was diagnosed at age one, there were only 120 people in the world diagnosed with the disease. Let me repeat that….there were only 120 PEOPLE IN THE WORLD diagnosed with the disease.
While some may look upon that as a good thing, it isn’t good for those who are affected by it. ML4 does not get the attention that a more common illness like downs syndrome or sickle-cell disease does which means there is not a whole lot in the way of research or funding to find treatments or a cure.
From what is known of the disease, most people affected by it will probably never walk or talk, will most likely reach a maximum developmental age of 15-18 months in language and motor function and will have severe visual impairment typically losing their sight completely in their teen years. You can get a glimpse into the world of ML4 sufferers and their families through this short video.
Needless to say, it’s not encouraging….however despite these odds, Danielle has shown amazing will and determination. She has beat the odds in that she can now walk with the aid of a walker. She can communicate through some basic sign language. Danielle is an amazing little girl. She endures hours and hours of physical therapy almost every day with an amazing attitude, and her hard work has paid off!
Danielle is the daughter of my oldest and dearest friend Alissa and her husband Chris. Together, the two of them work tirelessly to provide the best possible care for their precious daughter. From the day of diagnosis they have done everything in their power to get Danielle the help she needs to succeed.
While I will never be able to even imagine the difficult road that they travel each and every day caring for Danielle….while I will never be able to truly understand what any parent who has a child with a profound disability must endure, I still want to help….
But what can ONE person do?
Today, I’m hoping to RAISE AWARENESS for ML4. Since it is such a rare disease, most people know nothing about it. I’m hoping that this post will gain some “legs” and help get ML4 on the public radar and possibly generate some much needed funding for the ML4 Foundation. I personally have donated to this foundation and will continue to do so on Danielle’s behalf.
|Click to go to the ML4 Website|
The mission of the Foundation is to fund, promote, and support medical research dedicated to developing treatments and a cure for ML4. If you have any interest in learning more, you can visit the ML4 Foundation website.
I ask that you share (buttons below post) this post with people you know so that we can use the power of the internet to raise awareness of ML4 and this pro-active foundation. If you feel inclined to give to the foundation, you may designate the donation in honor of “Danielle Marino”.
I will close this post with this quote from Annette Funicello….a lesson for all of us….