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Courtney Rosas is a five year-old
child diagnosed with a terminal
illness called Spinal Muscular
Atrophy type 1, there is no
treatment or cure. There are many
limitations to what Courtney can do,
even breathing on her own is
impossible, she requires the use
of a ventilator twenty-four hours a
day along with a pulse ox, feeding
pump and a suction machine. This
child stays in her hospital bed in
her bedroom at home sometimes for
weeks at a time, watching
television, seeing children in her
favorite programs do things that she
will never be able to do, running to
catch a ball at the park, learning
to roller-skate or even speaking the
words "I love you" to her mom.
Courtney can think and learn just
like any other child her age, she
can feel pain and sensation and she
has normal hearing and vision.
Courtney communicates with her eyes
by looking at things she chooses
such as which video she would like
to watch. With the help of some very special people, Courtney has had many dream come true experiences that most would think were impossible for a critically ill child like Courtney. Here is another amazing story in Courtney's little book of life. On Wednesday afternoon, September 10, 2008 we arrived at the Portofino Harbour Marina in Kemah, Texas to take Courtney on her miracle journey, sailing in Galveston Bay. We were greeted by Captain Dave McCabe, owner of the Blue Marlin III, along with his volunteer crew members, Susan Levy and Manny Alaniz. With careful planning by my daughter Candace, Courtney's mother, and with helpful suggestions from Capt.Dave, we were going to slide a back board under Courtney and transfer her safely from her wheelchair/stroller on the pier onto the sail boat. Capt.Dave had a blue tarp that he and Manny rigged up to protect Courtney from the sun, after that we were on our way. There was Courtney, her little sister Kendall, my youngest daughter Sarah, Candace and me going on this amazing sailing trip into Never Never Land, a place many would have thought impossible for a medically fragile child, only a dream......but not for our little princess, she can and did go sailing. We saw the Kemah Boardwalk, the many restaurants and the rides and attractions as we passed by, there were many other boats in the bay, also. When we were far out into the open water, the engine was turned off, the sail was opened and the tarp was rolled back so Courtney could see the endless water for as far as the eye could see, the wind was blowing through her hair and she could hear the waves splashing on the side of the beautiful sailboat. Up above Courtney could see sea gulls flying in the wonderful blue sky. At home before our trip, Candace had helped Courtney to make a message in a bottle to throw out into the water, Candace has hopes of someday getting an e-mail or call from some person, from far away saying they have found Courtney's bottle which had been tossed out into the water, with the purple paper rolled up inside with a message and Courtney's hand print on it. As we were out there on the open water, Candace and I looked at each other, knowing what the other was thinking and feeling. We had a sense of urgency to accomplish this miracle for Courtney, never knowing how much time she has left, we want her to be able to do as many things as possible, at least once. We knew that this was a blessing that was meant to be for for our precious little princess. We could feel God's presence on our journey, feeling peace while memorizing the breath taking view. I tried to see things as Courtney does, seeing everything for the first time, through the eyes of an angel. I hope that little Kendall will remember this special day with her older sister, forever. The girls received certificates proving they had indeed gone sailing, and were also given beautiful Heart of Sailing metals to wear around their necks. Kendall loves her metal so much that the day after our sailing trip as we were packing our things to evacuate to San Antonio from Hurricane Ike, she put her metal in her bag along with a few of her other treasures that she didn't want to leave behind. The Heart of sailing foundation is a program where all over the world, volunteers like Capt.Dave, take children with special needs on their sail boats, giving them an experience of a life time. These people, out of the goodness of their hearts, want to share their love of sailing with these children. Capt.Dave will be more than happy to set a date for your child, patient or student from Houston and surrounding areas, to go sailing. We called and he set the date for the very next week for Courtney. Capt. Dave has a goal set, by the end of the year, he wants to take at least 300 sailing trips with these children, even more if possible, Courtney was number 211. I personally would like to suggest to all the families with children who have Spinal Muscular Atrophy to please, don't pass up this wonderful opportunity to go sailing with your child and family. There may be a location hear you. If you would like more information or would like to use any of these photographs in the montage sent via e-mail to you for use in advertising please contact me, Linda Rosas 281-795-8272. http://heartofsailing.org/locations.asp Hurricane IKE update: I spoke with Capt. Dave and he reported that his sailboat the Blue Marlin III sustained no damage and that the pier at the marina will be repaired from the hurricane's damage soon, so please call and schedule your childs sailing adventure now, your immediate family members can go along with your child or you may want to discuss taking small groups of students. For the Houston Texas area contact Capt. Dave McCabe Heart of Sailing Houston- Galveston, Texas Portofino Harbour Marina, Kemah 1714 Festival Drive Houston, TX 77062 Phone: (281) 488-1780 Cell: (281) 507-1867 Dave McCabe |