Mile 1031  Spirit of America Ride for Hydrocephalus Day 20 Recap

The odometer just rolled over the 1,000 mile mark today. Our Spirit of America Ride for Hydrocephalus marches on just like those saints in the song.  With the jazz still ringing in our ears, we have left the bayou behind us and we are riding through the flat farm country of Southwest Louisiana. According to the map, we will be trading this lush green countryside for the Texas plains in about 150 miles.

Yesterday’s ride was uneventful but with no flat tire, perhaps our luck is changing. I caught a great shot of a field of donkeys which we thought was pretty cool. They seemed as amused by us riding by as we were by their curious stares.

A couple of nights ago, we treated ourselves to a night at the Comfort Inn in Lafayette, LA. Anne Gros was so great, and we liked the hotel so much, we decided to stop at another Comfort Inn in Sulphur, LA,  about 5 miles west of Lake Charles.

When we check-in to a hotel, we always seem to find ourselves explaining our hot and disheveled appearance. We do not mind repeating this explanation as it usually leads to terrific conversations with the manager or  front desk person. Last night’s encounter led to another reminder of why we ride for hydrocephalus.

When we checked in at the hotel in Sulfur, we had a brief conversation with the assistant general manager, Tina Wilbee. No sooner had we settled into the room than the phone rang. On the other end was Helen Keyes who is the Multi-Director of Sales for several Comfort Inn hotels in the area. Helen was very interested in our ride for hydrocephalus as her granddaughter, Daja, has the condition.

We have come across several similar stories. We are proud to share Daja’s story with you as told by her grandmother, Helen Keyes:

We learned that Daja had hydrocephalus when my daughter was in her 7th month. We were fortunate enough in that Daja has not had to undergo surgery to implant a shunt. The fluids are draining as they should but Daja cannot speak or walk. She is 11 years old now and had surgery when she was still a baby to try to stretch the muscles in her little feet. She had her second surgery recently to try to help her strengthen her leg muscles. Since, she has been going to physical therapy that includes bicycling. Unlike Mark and Mary, her bicycle is stationary but she has logged many miles too!

Daja has always been an adorable child. When she is not in her wheelchair, her favorite mode of transportation is scooting. I can attest to the fact that she can get around remarkably well this way.

Daja has minimal social skills and is often happy just playing by herself. She cannot speak but has developed her own communication style to let us know what she wants. She has learned how to feed herself but cannot use a spoon.

Daja loves music – all music. She is happiest with toys that make sounds and will spend hours making them “talk to her.” I am a member of the Hydrocephalus Association and receive their emails every month. It helps us keep informed on what is going on as well as connected to other families coping with the effects of this devastating neurological disorder. Your support to the Hydrocephalus Association is appreciated by me and by other families like ours.
The Hydrocephalus Association is planning their inaugural Houston Walk for Hydrocephalus in The Woodlands on Saturday. Delays in our bike tour mean we will be riding longer in colder conditions as we head for Denver but we have decided to alter our course to stay a couple of extra days to in Houston to take part in this very important walk. You can sponsor us by donating to the Hydrocephalus Association’s Mark and Mary donations website. Celsius is matching the first $3,000 of donations; any help you can give is greatly appreciated. Your donation goes straight to the Hydrocephalus Association. The walk will be this Saturday, September 29, from 9am-12pm at the Rob Fleming Park, 6055 Creekside Forest Drive in The Woodlands, TX. This is their first walk so if you live in Houston area, please come join us as we march united for this worthy cause. Please introduce yourself to us. We will be easy to spot in our blue Celsius biking shirts.

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