Nicki Kristof Photography...The Blog: April 2009

I am reaching out to invite you to the 2nd Annual Madison’s Wish Charity Golf Tournament.
Thank you so much for the support of last year’s golf tournament. We look forward to another outstanding event this year.
The new tournament location is Jacaranda Golf Club in Plantation, FL.

This tournament has had great community response so far. We are receiving more and more golfers daily (Keep them coming).

All players must be pre-registered (by May 8th) in order to get accurate counts for food and golf spots.
For those of you that want to register as BANQUET ONLY the deadline is May 8th as well and it begins at approximately 6:30pm.

For more information visit Masison's Website:
http://www.MadisonsWish.com

Madison's Story
Madison was diagnosed with a Spinal Muscular Atrophy (SMA) on October 2, 2007, two days shy of her first birthday. Since then Madison has lost most of her strength in her entire body. She cannot bear any weight on her legs, cannot lift her head when laying down, cannot cough on her own and cannot take deep breaths while sleeping. She is very bright, social and happy little girl.
There are ways to improve and even extend Madison’s quality of life. To do this Madison uses a Cough Assist, the Vest, Nebulizer, BiPap, Suction and Pulse Oximeter daily and more when she gets sick.
She needs Respiratory Therapy, Physical Therapy, Water Therapy, Occupational Therapy, and Speech Therapy five times a week. She requires special orthodic bracing called AFO’s that she must wear all day long every day, knee stablizers and a hand splint as tolerated. She must use her standing frame daily to help with circulation, stretching her limbs, bone growth, and constipation. She is on a special Amino Acid Medical food formula for easier digestion and to support her intestinal tract, in addition to a strict vegan diet.
She must have Vitamins, Glutamine, ProBiotics, cornstarch and Miralax daily as well as Carnitine, Oral Albuteral medication and Synergist shot monthly. We have more hope now knowing we have a good aggressive plan for care. Lots of work, but she is worth every minute. We truly believe in will power and taking aggressive steps for the health of your children. We will do everything in our power to keep Madison well and to one day win this battle against SMA.