02/16/2026
To each and every Miracle Worker who gave of their time, energy, thoughts, and dollars in support of finding a Miracle for Mila, I want to share the recent miracle we never saw coming.
First though, I want to share, once again, that our family cannot thank you enough for all you have done. As you can imagine, the thought of losing one’s child-or outliving her-has been all-consuming. I know some of you know that pain personally, and others have empathetically felt our pain acutely. Your support has meant so much when our emotional energy reserves were so depleted.
If you missed it, our campaign came to an end – 1.3 million dollars was raised. I can’t tell you the effort it took for us to regularly make videos and posts, convincing myself every day that number was doable, while deep down, not being sure, but knowing my daughter’s life depended on it. However, with just a handful of parents and their dedicated community, it happened. One of these children is being treated, right now. When this trial ends, any child with SPG50 moving forward will have access to treatment as they are diagnosed. (Incredible and should have been everyone’s story!)
With very little time in between finding out we did it and finally being able to take a social media breather…we received a call from Boston.
Mila had to have many tests for this trial, one of them being a skin biopsy. Given how few people have had SPG50 – her mutations had not been seen before, and this biopsy would confirm the suspected lack of protein functionality. We were told it was a technicality – and other families have had to do the same. One of her mutations was ‘likely pathogenic’ and the other was ‘unknown’. They had hope she had a ‘leaky gene’ with partial functionality (due to her cognition being higher than other kiddos with these mutations) However, this call came with unsuspecting news that led to more questions – her protein structure was functioning normally.
What does this mean? Short answer, they don’t know. Whole exome testing brought us the SPG-50 mutations, nothing else. However, with her protein showing normal functioning, it would indicate one of her mutations is benign; SPG50 is not causing Mila her medical issues.
Since then, Boston has now done whole genome testing on Mila. We have been trying to process this news and hoping to share a more definitive update, but, unfortunately, everything in the rare disease world takes more time and money than I wish. We were told this testing will take many months to receive answers from. We will not be back to Boston until June and they can not even guarantee this testing will have completed by then.
I will tell you, the Doctor tempered our excitement with “Something is still wrong” (given her ambulatory issues and her age). How is it possible she carried both mutations for a ultra rare disease AND we’re looking for mutations even more rare?! The good news is, he assured me that more rare doesn’t always mean more severe and left us with “It’s very likely not going to worse news than SPG50”.
We are trying our best to take this as the Miracle I confidently stated would happen from the beginning.
Truthfully, it is bittersweet –after just receiving the relief of ‘we did it’ and now knowing too much of the rare disease world, but once again having this unknown, all I can fear is when we find these new results, we may end up in the same position we were in this past August, and that is hard to swallow.
Apologies for the length of this, I tried to do this on video many times but have not yet mastered sharing all this without emotion. I am not sure what will come of our next chapter, but I don’t feel like I can wait for that due to the SPG50 chapter ending.
With all this all being said, we do not want to assume what folks want their donation dollars to be used for. Some donors were clear that they wanted their donation dollars used for Mila specifically and we could never guarantee that. Now, we can, but she does not need this trial. Her medical expenses have already reached our $25k out of pocket family deductible last year (That truthfully, we planned to ignore because this trial was all that mattered) and I have no way of knowing what her near future needs will cost. Cody and I have gone back and forth on this though and know there are generous families who may have given above their means, given the previous circumstances, and we want to make sure we are covering all scenarios.
We want to offer options for those that donated:
1. The final payment for the SPG50 trial is due in March. If you want your donation applied specifically for THAT trial, please let us know so that we can make that donation to Mila’s Corner.
2. If you donated more than you would have given the circumstances and want to reclaim any of that donation, please let us know, we would be happy to return to you specifically.
You can message us directly here, or on either of our FB pages – Jami Wood/Cody Wood.
If you donated to Mila’s Corner, the 501c3 –we do not have access to refund that money as it has already been put towards the trial. I hope that these donors feel good knowing their donation is saving countless children’s lives.
A Miracle has happened for Mila, and while she will still struggle, we are incredibly grateful to be able to imagine a long life for her, alongside her twin sister and older brothers. Until we receive news otherwise, we have once again been given hope, that there is a chance, she won’t always be watching her twin sister run and jump from the sidelines.
