born full term with a birth weight of 8 lbs.1oz. and 21in. long. There were no
concerns about her health at birth. At four months of age she was introduced to
cereal and had severe difficulty with constipation. We spent plenty of nights
in the emergency room due to the constipation and tried several different
medicines and home remedies with no improvement. We decided we could no longer
see her in such pain so we insisted she was hospitalized to find the problem.
Subsequently, Valerie was diagnosed with a rare genetic kidney disease called Cystinosis. At eight months old in June of 1997 Valerie started receiving her medications and being fed through an NG tube.
In August 1997 she had a Gastrostomy tube placed because of physical & emotional difficulties with re-placing the NG tube every 3 days. A Mic-key button now replaces the Gastrostomy tube. Valerie continues to receive her medications & night feeds. She now eats a variety of table foods, her weight has stabilized and she continues to gain weight at a steady pace. She is a very petite, very blonde child who's features & characteristic's coincide with a child diagnosed with Cystinosis.
If you wish to email us back, you are most welcome to, at:
You can visit Valerie's website at: http://www.firstbeaches.com/valerie
Mike & Lani Zakrzewski