Grady Michael Salguero is our sweet and courageous boy who was diagnosed in utero with Jacobsen Syndrome. Jacobsen Syndrome is a deletion of the 11q Chromosome and affects each diagnosed child differently.
The specific medical issues Grady faces because of this deletion are many and include, but are not limited to: deafness, cortical visual impairment and loss of visual fields, a bleeding disorder, kidney defects, enlarged aorta, feeding difficulty (resulting in a feeding tube), low muscle tone in his trunk and neck, high muscle tone in his arms and legs, developmental and mental delays, and speech impairments.
Grady is now five years old and has had 12 surgeries to date with the possibility of future surgeries. Before he was born, we knew his skull had fused prematurely and at 5 months old he had his first surgery to fix his CranioSyntosis. From there, he had Eustachian tubes placed twice. The first time resulted in a complication and ended up with him spending almost a week in the hospital due to a severe bleed. After that he had a combined surgery to fix a double hernia and Orchiopexy. His most recent surgery was Bilateral Cochlear Implants. Grady is completely deaf without his implants. The amount of growth we have seen since his implants were put in has been amazing.
Grady currently receives feeding, physical, occupational, vision, hearing, play, aquatic and hippo therapies. Each of these therapies plays a vital role in helping Grady achieve milestones and goals. Through all of the hospital stays, surgeries, and therapies, Grady is consistently one of the happiest people I've ever known. Grady is always smiling, and willing to play a game. He loves attention and is known as a “cuddle-bug” by anyone who has ever held him.
Grady participated in a North Carolina state-sponsored program known as Early Intervention until he aged out of the program. At that time, all equipment loaned for Grady’s treatment and therapies had to be returned and the burden of obtaining said equipment was left on the family. Some of Grady’s required equipment is covered by insurance but much of it is not. Likewise, the insurance coverage for his therapies is limited to a certain number of visits and certain providers. These limitations often require out-of-pocket expenses by the family.
We have been so thankful for the Grady M. Salguero 11q Foundation and what all it has done for Grady as well as the burden it has lifted off our family. The Foundation has provided multiple items for Grady including: special equipment that helps Grady with mobility and gaining strength, adapted toys that allow Grady the ability to play as any other typical five year-old would, additional therapies (that otherwise would not be provided) and the possibility for additional items Grady will need.
We love Grady and his motivated attitude and are willing to do anything we can to help him succeed in life. Despite his many medical issues and physical delays, he remains the happiest little boy you will meet with one of the greatest determined attitudes. Grady is willing to put in the work and needs us to help him succeed!
All contributions and support given to The Grady M. Salguero 11Q Foundation, Inc. on behalf of Grady is greatly appreciated! The Grady Foundation is an IRS 501(c)(3) foundation, which makes all of your contributions tax deductible. We thank you for your consideration and cherish your prayers!
-Jeff and Nora Salguero, Grady’s Parents