Help Lydia Thrive: Support Her Stem Cell Journey

** If by some crazy chance our goal is met/exceeded, we will put excess funds towards the GoFundMe fees first, and then future stem cell + intensive therapy combo treatments. Visiting every 6 months is most effective at this age while neuroplasticity is at its peak. You can confirm this use of money by following along with our family online! :)

Lydia is, in the words of her neurologist, a medical miracle. Not only that but “her functional abilities already far exceed what would have been expected based on the severity of her injury”.

Miss L was born happy and healthy. She contracted a deadly bacterial meningitis infection at only 3 months old. She spent 54 days in the PICU and lost over half of her brain matter, but ultimately was victorious against her 1-in-4 survival odds!

We’ve given Lydia every opportunity we can. She’s enrolled in many play-based therapies in hopes we can maximize her long term quality of life by maximizing her early years neuroplasticity. She maintains constant care between 11 specialty physicians and 10 therapists. Time not spent shuffling between clinics is dedicated to ensuring Lydia feels she has a happy and inclusive childhood.

We’re grateful to be financially supported by disability Medicaid for the bulk of Lydia’s medical needs. However, Medicaid does not cover majority of the treatments that create lasting change. We pay each pediatric therapy intensive and any therapies outside of PT/OT/speech out of pocket. And so far we’ve done our absolute best to address these multi-thousand-dollar expenses.

And then came stem cell treatment…

The use of stem cells is proving to be an extremely promising treatment for cerebral palsy and neurological damage as it allows the brain to replenish some of the otherwise lost brain cells (they cannot regrow). And not only is stem cell promising, but its EXTRA helpful for kids like Lydia.

If you recall, Lydia was whisked into a medically complex life thanks to bacterial meningitis. This directly impacts/weakens the blood brain barrier. Most clinical hesitation surrounding the feasibility of stem cell transfusions relates to getting cells to pass through the near-impenetrable blood brain barrier.

Lydia’s blood brain barrier has been rocked to its core. She is not immunocompromised at this point, luckily. BUT…she is primed to successfully receive stem cell transfusions as a result of this weakening! It’s easier for stem cells to find her brain than other kids that developed cerebral palsy due to birth injuries and the like.

We recently rounded up the remainder of our excess funds in order to take Lydia to Panama for 40 million mesenchymal stem cells derived from a donor umbilical cord and administered via IV. This treatment paired with the necessary post-op therapies totaled $32,000.

I can say with confidence now that the cost was worth it as Lydia is flourishing in her current growth phase post-cells! She’s on the cusp of supporting her own head *finally* after 1.5 years focusing on this milestone. She’s also becoming vocal! She’s starting to make serious progress towards crawling, rolling, grabbing toys to play with, etc. Well-wishers quickly made note of her drastically improved vision, focus, and demeanor also! These changes all developed only 2 weeks post-transfusion. We weren’t supposed to see much in the way of differences for another month yet. 

I’ve cried a number of times over skills I’d started to fear weren’t in the cards then suddenly developed after stem cell. It’s truly been an incredible boost to Lydia’s quality of life!

 She’s doing so well that we’ve set our sights on another round of cells. She can repeat the treatment every 6 months — which is most effective while she’s so young with so much potential for neurogenesis.

But, it’s time we turn to our village for help. We cannot sustain the level of treatment Lydia receives on our own. We need your help giving her the chance at a new stem cell transfusion. $32,000 is far too much to come up with after having just spent that amount just a few weeks ago. And this is not her only out-of-pocket treatment so we cannot put 100% of our income towards this fund. 

We’re indescribably grateful for the love you’ve showered our baby with! We never could’ve imagined so much kindness directed at one little girl.

with love,

Alexa + Lydia + Dan

@adventures.of.mommy