Wylder’s Research Fund

Just a little info to fill you in on what Wylder’s Research Fund is.  We are very proud … as our Warrior continues to help others.
 
Wylder research fund is for never been done before  research for Niemann Pick Type A disease.  We had several different tissue samples of most of Wylder’s major organs along with stained histopathology slides sent to Mount Sinai in New York which is the international center for Neimann Pick Types A & B.  This was something our family vacillated about doing … but we felt compeled to help … and new Wylder would want to help others.  We had this done privately … because as a mommy, I new wylder was DONE with hospitals.
 
 With this fund we are hopeful to bring a better understanding to this disease, and ultimately develop/discover potential treatment options in the future. To date the majority of research conducted for NPA has only been done on mice, and we feel very confident that through Wylder we can learn more about NPA and the effects it has on specific organs of the body….opening the door for more research, a better understanding, and eventually a treatment option for families faced with the soul crushing diagnosis of Niemann Pick type A.
 
 There is nothing worse than getting news that your newly precious child has a fatal disease…and there is absolutely nothing you can do about it. Then finding out there is very little research being done because of how rare the disease is … we want to help and make a difference and our Warrior continues to make us so proud by giving to others (now through research). 
 
It is our goal to one day be able to provide a family with a baby diagnosed with NPA with at least an option for treatment…yes it would be experimental, but having options instills hope, and there is no medicine like Hope.
 
As you know Wylder has taught so many of us important life lessons in his short life, and now he will be teaching the most prominent doctors and scientists that study NPA, more about his disease than they have uncovered in the last 20 years. Just another way to celebrate and continue to bring value to Wylder’s precious life.  We wanted you all to have an understanding of the purpose behind the fund … it is about paying it forward and HOPE for others.  
 
To help us with this research fund, Temple Bar and Grill in Scottsdale, AZ has offered 5% of their sales THIS Friday donated to the fund. 17050 E. Thompson Peak Parkway.  So please stop in and grab a delishes batch of Temple style wings and help a great cause.  HUGE thank you to Temple. 
 
Wylder James you continue to inspire us with your ability to pay it forward and HELP!!  Can’t wait to celebrate our MOST BEAUTIFUL’s life with you on Saturday.  Attire is resort causal …. shorts and tommy-bahama-like top is perfect.  Much love. 

Comments

  1. what a great idea! I know Wylder is smiling at his mama and daddy keeping his message alive by bringing hope to others. I can’t wait to see all that comes of Wylder’s life. much love, Chelsea

  2. Nanci & Mike Glassman says:

    There is indeed “no medicine like hope.” Thank you for continuing to help other families dealing with NPA. You are awesome!!!

  3. Such a brave and courageous thing that you both are doing for Wylder and all the kiddos/families affected by Niemann-Pick. A most wonderful way to honor the Warrior’s legacy and maintain continued purpose for such an amazing boy. We too have considered doing something similar (tissue sample wise) and will reach out to you at a later date to seek your advice. Keeping you all in our thoughts! – Brooks Family

  4. cari gallo says:

    We cannot wait for an intimate dinner with you both. Both celebrating Wylder’s life and also the research that you both continue to do out of love. :) We will see you in September. Much love, prayers and our hearts to you this weekend.

  5. Sweet Wylder’s legacy is infinite….yes, all the lessons he taught us and now helping the medical world. I continue to pray that our researchers find something to knock out this disease. xoxox

  6. Cathy Johnson says:

    What a wonderful thing to do, Shannon and Steven! Such a gift! I, too, continue to pray that the research being done will yield great results. And I continue to be so thankful for the lessons the Warrior and his friends have taught and continue to teach!

Speak Your Mind

*