Collazo, 42, the financially strapped, single mother of two, was stunned in 2004. After a yearlong hospital stay and many invasive tests, her youngest daughter Ciara Rivera was diagnosed with multiple sclerosis. Rivera was only 15 years old when she began losing feeling and movement in her limbs. By 16, doctors concluded she had MS, a disease affecting the central nervous system.
"I just couldn't believe the diagnosis," said Collazo. "Until then I had never heard of multiple sclerosis. I felt like I was in a nightmare. My heart ached for my daughter. For the better part of a year, Ciara could barely move. It seemed multiple sclerosis would threaten to rob her of her youth and her future. A year that should have been spent preparing to celebrate her sweet sixteen and her debut, was spent instead grieving one loss after another."
Multiple sclerosis is an autoimmune disease for which there is no cure. In a healthy individual, immune cells work to protect the body from disease-producing organisms. In the case of those, like Rivera living with MS, the immune system mistakenly attacks its own body tissue. Myelin, the protective coating or insulation lining nerve cells, is the primary target of this particular attack.
These nerve cells facilitate nerve conduction. In some instances the nerve cells themselves can be damaged. Myelin is lost leaving scarring, or sclerosis, at multiple sites in the central nervous system. It is these scars that give the disease its name - multiple sclerosis. The scars eventually begin to slow or interrupt the transmission of nerve impulses, resulting in symptoms such as numbness and tingling, imbalance, fatigue, blurred vision and speech difficulties.
More than 6,000 Connecticut residents, 450,000 nationwide, battle the effects of multiple sclerosis. Symptoms can include, among others, numbness and tingling in the extremities, difficulties with speech and vision, stiffness and loss of mobility and, in extreme circumstances, complete paralysis.
Rivera, now 19, battles a very aggressive and unpredictable form of MS. She never knows when she's going to lose function or mobility. One day her vision is perfect. The next she may not be able to see. One day she can walk. The next she may not.
Despite the effects of MS on her life, Rivera and Collazo have been determined to raise awareness. In 2006, while on a day pass from Connecticut Children's Medical Center, the pair attended MS Action Day to speak with legislators at the state Capitol building about MS and its affect on children. At the time, Rivera couldn't walk, could barely move her arms and could only whisper a few halting words at a time. Collazo was her daughter's voice that day.
"My mother is everything to me," said Rivera. "She supports me both emotionally and physically. When I want to give up, she is the voice of reason. When I lose hope, she reminds me that I am loved. And love conquers all."
Collazo has spent the past three years working with the National MS Society, Connecticut Chapter helping to educate people statewide on pediatric MS. She spends hours each week handcrafting beaded jewelry with messages boldly calling for a cure. Last year Collazo and Rivera had tattoos inked declaring their commitment to the cause. The pair has also participated in chapter events, putting together fundraising teams comprised of family and friends equally dedicated to the cause.
Collazo is prepared to do anything she can to help fund scientific research. In fact, from Sept. 11 to Sept. 13, Collazo and her team Kids Get MS Too will walk 50 miles in just three days, an experience that is guaranteed to test Collazo's strength and determination. The event, known as the MS Challenge Walk, takes place annually in Cape Cod. Participants, hailing from Connecticut, Rhode Island, Vermont and Maine, recruit sponsors for support. Proceeds benefit the National MS Society and its mission to create a world free of MS.
"Sandra is very dedicated to doing what she can to make sure we find a cure," said Lynette Coleman, associate vice president of programs and services at the Connecticut Chapter. "Economically, times are challenging. But never have the needs for people with MS been greater. It's more important than ever that we raise the funds that will keep not only research moving forward but also, lives. Sandra is stepping up to that challenge."
For Rivera, stepping out is more than just accepting a challenge; it is a declaration of love and a sign of her resolve to remain in the fight until the end.
"People can never begin to know the anguish I have felt as a result of my daughter's battle with this unforgiving disease," said Collazo, who at one point was unable to even bring her daughter home from the hospital because the apartment where they lived was not handicap accessible. "I have felt helpless and powerless. Becoming actively involved in the fight against my daughter's disease empowers and strengthens me. I believe that I can make a difference. I hope others will find it in their hearts to support me in the fight."
For more information about the MS Challenge Walk, go to www.nmss.org or contact the National Multiple Sclerosis Society, Connecticut Chapter at (860) 913-2550. To sponsor Collazo and support her efforts to help fund a cure, please mail checks, made payable to the National MS Society and listing Sandra Collazo in the subject line, to 659 Tower Ave., First Floor, Hartford Connecticut 06112. To learn more about MS and its effects on children, please visit www.ctfightsms.org.
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