Search

We've reached $500K!!! Now what!?

CLICK HERE to go to the GoFundMe

Photo from last night when we found out we reached $500K!

MY FRIENDS! This may be the happiest Friday EVER.


We have done the unbelievable this week. With the incredible boost we’ve had in GoFundMe donations, in addition to other means of donating, I am DUMBFOUNDED & AWESTRUCK to announce that we have surpassed our first major milestone goal of $500K. We did it. We. Did. It. WE DID IT.


It is impossible to explain how I feel right now - this is just unreal!!!


On March 22, 2021, the day we received the diagnosis, I spent the evening crying with a dear friend on my living room floor while Damian tried to cheer me up with funny sounds and waving (Brock was on a plane home at the time, we were NOT expecting the prognosis we got or else he for sure would have been there!!). I remember telling my friend that I felt like I was at a crossroads: do I spend every ounce of my days now just playing with Damian and taking as many photos and videos as I can? Or do I use all my energy to fight for his life? I have always strongly believed in the power of community, but it still took me a couple weeks of processing and researching and praying before I ultimately decided to fight. I'm so glad I made that choice.

Thank you for being here. Thank you for your gracious generosity. I knew people are good, but you all are SO GOOD. I have gotten so many (maybe even most) messages saying "I know it's not much..." But please believe me when I say it is EVERYTHING! The combined efforts of what you may think is "not much" is going to culminate in saving my son's life and so many others!!!

I would never have guessed on March 22nd that this would be where we are today. I am SO grateful. Thank you for giving me and my family so much hope for the future!


Now What?



So what is the future? As I've noted throughout the campaign, the Wylder Nation Foundation and the affiliated scientists and doctors from around the world are pursuing a couple different potential treatments, which are all looking optimistic at this point. The estimated cost to manufacture and administer the (likely) more readily-available drug (which is being referred to as the "small molecule drug") is about $500,000 - which is what prompted our initial goal marker. Also required is a pharmaceutical company to agree to manufacture the drug. I am hopeful in current on-going conversations related to this that we will lock this in soon, but continued spreading of awareness, as well as your prayers and good vibes, will help us so much in getting this necessary puzzle piece placed quickly!!


The second treatment, Gene Replacement Therapy, requires more experimentation and research, but it is close. Without an increase in funding, a clinical trial for this treatment is 4-5 years away. The estimated cost to expedite the development is $1-3 million. Damian MAY not need this if the first treatment can work as a permanent solution, but as a mother, I do not want to take any chances and put all my eggs in one basket. If it turns out that the small molecule proves to only be a temporary solution, I am going to have wanted the Gene Replacement Therapy to have continued development at its quickest pace throughout all this. What we don't know is whether any treatment will only stop the regression of the disease and keep Damian in whatever state he is in, or whether Damian will have the chance to recover the damaged brain matter. That question is constantly on my mind. With Damian's constant regression, this treatment needs to come together as fast as possible.


I hope I'm making sense here, but in case I'm not (understandably), here's what this all boils down to:

  1. Spreading awareness and getting a lot of publicity is of major importance when trying to convince a big pharmaceutical company of the benefits of manufacturing a drug for a rare disease.

  2. Like any big research undertaking, the more money that is raised, the quicker a solution can be found (more money = more personnel on the job, ability to try more solutions simultaneously, etc.)

I can't help in a lab and I don't have ability to run medical tests (if only I could!!). All I can do is help spread awareness and raise the money needed to boost the research development and dramatically speed up this process. And if you haven't heard already, I'm doing whatever it takes to save Damian.


So there is more work to do. But we're doing it!!! If it takes only $500K and a pharmaceutical agreement to do this, then we're practically there! But even if it ends us taking the full $3 million to get this done, we are already 1/5th there!!!


And thanks to you all, I have NEVER BEEN MORE HOPEFUL!!! I love you all. Every generous donation (and yes, that includes every "not much" donation!), every share, every request to your HR manager so your employer can match a donation, every "like" and "comment" to boost one of my posts - it all means the world to me. And it all is making a difference.


Thank you. Let's keep going!!!


 

Please know that I am not a doctor. I am not an official spokesperson for the Wylder Nation Foundation. I am an overtly tenacious mother who will do anything for her son. Any errors made in writing were an honest mistake and will be corrected as I learn more.

3,690 views1 comment

Recent Posts

See All