February 28th is Rare Disease Day. Typically rare diseases are underfunded in the area of research.
What can be done when there is a clear need and attention is weak? Simple. Average citizens step forward, rally courage and become a force of action.
This is very true of Melissa, her mom Kathy and Melissa’s PCA, Janine. They have found their niche, their cause, their calling with in the leukodystrophy community.
What is amazing is the healing aspects of connecting with a group of families who are all struggling with similar issues.
When each family received the diagnosis that their child had some rare form of leukodystrophy and anguish gripped their heart, could they have imagined that it would be that child who would change the world? Not just in their corner of the world. No the power these innocent children, young adults and adults with leukodystrophy have is nearly magical and certainly miraculous.
As family and friends draw near to develop a care plan that will last for years and change frequently as the disease progresses loved one’s actively seek ways to enhance the child’s well being. This multi-layered process of constant education and research takes up a great deal of time.
Beyond the support of family, friends, and perhaps other leukodystrophy families the sweetness of these innocent children becomes the conduit for love and connection.
You cannot help but be touched deeply when you look into the eyes of these angels. You become motivate to action.
I spoke to Melisssa this week. I asked her how she felt about her new found connection with the leukodystrophy community. She said she was enjoying it. Although she can no longer recall all the details of an interaction she knows in her heart that she is connected to somethings that is extraordinary.
What happens when a connection of this nature occurs? What happens when people who have never met one another join together to create change? It seems clear to me. First of all they lend to each other a level of support that is unique because of their life experience. Secondly they set in motion action that is sure to create change.
As mentioned rare diseases are under funded in the area of research. Currently there are great strides being made in leukodystrophy research in the area of genetics. This is incredibly positive news for families dealing with progressive diseases.
Melissa wishes to challenge people even family and friends to educate themselves about leukodystrophy. She told me the other day that she has often felt that people have not complete understood what this disease has done to her. She felt people sometimes didn’t understand, as the disease robs parts of her brain she can not help the way her mind works or her body functions.
It is so important for all of us to pay attention to ways we can understand the process of a disease that takes lives. One thing Melissa said that I thought was especially sweet and insightful was that her mom was her rock but she’s tired. I said, “Melissa you don’t miss to much do you?” She laughed. Never underestimate what a person with leukodystrophy or any neurological disease perceives.
For as much as she is aware that she needs a great deal of help, she is very mindful that her caretakers need a hand from time to time. The caretakers become burnt out with the demand required in getting through each day.
Melissa challenges us with her sweet persona to be more conscious of the scope of what the demand of leukodystrophy means to everyone involved.
Team Snowball is still busy getting out in the community. Melissa recently read her story to a room full of children at her local library. Proceeds from the sale of Snowball’s Great Adventure is going directly to leukodystrophy research.
We hope you will consider purchasing a book or two for yourself or to donate to a school or library and help Melissa leave a legacy that involves find a cure for this rare disease, leukodystrophy.
There is a paypal button on this site. We thank you for your time and continued support.