Dear Friends,
We ask that you join our family and support the National MPS Society by donating to the 2017 Annual Fund. The Society provides a sense of community and advocates tirelessly to improve the lives of families affected by MPS and ML.
Karina is 25 years old, a milestone because she has MPS IIIA. She is my big sister and the oldest daughter – our parents are Luis and Angela Guajardo. Reflecting on her role in our lives, I am extremely grateful that she taught me how to love unconditionally, run, laugh, sing and dance before the cruelty of her disease took a toll on her mind and body. My name is Anyssa and this is a glimpse into my family’s story of Karina and her legacy as a teacher in life.
Two sisters and their bond, one watches and one dances – but how time reversed their roles…
Karina was diagnosed with Sanfilippo on her fifth birthday. She was the best big sister, never missing opportunities to constantly care and love me. Our family has videos and photos of Karina joyfully hugging, kissing and saying, “I love you” – showing me how to do the same. I watched her, copied her and did everything I could to have her attention, even if the result was a bop on my head!
Time moved forward quickly, though, and soon she was watching while I was dancing. All that Karina had taught me was slipping away from her. There was so much pain and all I could do was love her through it. I questioned, “Why her, why not me?” MPS has taken so much away from my sister, it will someday take her, too, but not without a fight and not before she passes on a few more lessons.
While Karina watches, she remains an incredible role model. Through her severe illness I have found some slivers of positivity. Without words, Karina has inspired me to not waste time, identify life’s passions early and realize that my family, because of the National MPS Society, is larger than my heart can hold!
Parents through sorrow, silver linings and their daughters’ future
Even through the agony of MPS, our daughters have brought immeasurable joy. The bonds of sisterhood are undeniable, and Anyssa can bring smiles to Karina today that no one else can. Whether watching or dancing – we know that both Karina and Anyssa take a lead in the dance called life and leave each of us breathless.
As parents, we have been living with MPS a long time. Grief, sorrow and loss have filled the years. But our strength endures, in part, from the joy of our family bond and the National MPS Society. Through annual conferences we have joined forces with other families to make this journey bearable. Through years of fundraising we have watched research make great strides for treatments. Though these diseases are devastating, we are in awe of this generation of fantastic individuals and siblings that will transcend the future as we know it for MPS. The Society will be there every step of the way; they will continue to fight for Karina and others suffering, but they need your help.
Please give NOW to the Annual Fund. Help us in the fight to save our children, like Karina. The Annual Fund supports families and individuals suffering from MPS and ML, strengthens our educational resources and helps the National MPS Society advocate in Congress and at the NIH for increased research funding.
Tomorrow without these diseases is possible by giving today, on behalf of our family, we thank you.
Anyssa Guajardo, MPS IIIA Sibling Luis and Angela Guajardo, MPS IIIA Parents
