<div>Spastic Paraplegia 52 (SPG52) affects about 56 children worldwide. There is no commercial incentive for companies to fund development at this scale, so families shoulder the lift. Crowdfunding has already moved SPG52 forward at the Universitat Autònoma de Barcelona in Spain, but we need to close the next, time-critical gap so Leo and his peers are young enough to benefit when trials open.
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<div>Immediate goal: $340,000 to complete required safety &amp; toxicity studies (Phase 3)
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<div>Please donate today and share Leo's story. Your support does more than fund research- it protects the progress Leo and all the other SPG52 children fight for each day and gives them (and all future diagnosed children) a real, tangible, and attainable chance at a brighter future.
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<div>All funds will go directly to UAB for SPG52 gene therapy development. <a href="https://micromecenatge.uab.cat/terapiagenicaparaplegia" target="_blank" rel="noreferrer noopener"><a href="https://micromecenatge.uab.cat/terapiagenicaparaplegia" target="_blank" class="" rel="nofollow noopener noreferrer">https://micromecenatge.uab.cat/terapiagenicaparaplegia</a></a>
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<div>Leo arrived bright-eyed and perfect. I counted his fingers and toes, memorized the curve of his cheeks, and let myself believe that the world would be straightforward.
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<div>A few months later the quiet fear began. Leo struggled to roll and could not sit on his own. His head wobbled and his mouth stayed open, which meant constant drooling and bibs tucked into every bag and drawer.
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<div>Leo would be diagnosed with developmental delays and low muscle tone, and at 13 months he began weekly physical and occupational therapy. When he was introduced to solid foods, his low tone made chewing and swallowing difficult, so speech therapy was added to the regimen. I knew something more still seemed off... but three therapists every week became the routine and the source of hope.
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<div>By a year and a half the gaps were undeniable. Leo still could not crawl or walk, and his head growth had slowed, I we met with a pediatric neurologist who ordered a brain MRI.
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<div>A few days before Christmas, the results came in. The scan showed polymicrogyria (an abnormal number of small, irregular brain folds) in the frontal and temporal lobes, a pattern that often is associated with seizures rather than low tone. Genetic testing would be needed to get a clearer answer.
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<div>On March 17, 2025, the neurologist forwarded the genetic test results. Leo had Spastic Paraplegia 52…. a rare genetic disorder that I was told would give him a higher risk of seizures and significant speech and motor delays...and had no cure.
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<div>When you get news like that, there’s not much else to do but to keep going and pray for the best.... Therapies brought small, hard-won victories. Leo learned to sit up from lying down. He started to bear more weight through his legs with help. Every inch mattered - every little new sound was cause for a large celebration.
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<div>Then, a few days short of Leo’s second birthday, his first episode of seizures arrived. They were prolonged and perplexed the doctors. After a three day stay in the hospital he was discharged and the permanent deep seated fear of when it would happen again began to set in.
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<div>Then Leo’s Opi (grandfather) found a news article about emerging gene therapy efforts for this family of disorders, and that started a mad dash to read everything that I could find on the topic. What I learned through other families and researchers was terrifying… SPG52 also came with significant intellectual disabilities and was degenerative, which means that without an effective treatment, Leo’s hard-won progress from therapy would eventually fade. He would most likely not develop normal speech and be in a wheelchair by high school. Words cannot describe the grief.
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<div>However, there was hope.
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<div>This also led to discovering the SPG52 research taking place at the Universitat Autònoma de Barcelona in Spain, where a dedicated team had already been working for six years to build a gene therapy treatment path. They have already completed pre-clinical trials and the next step is safety and toxicity testing in primates, budgeted at approximately $340,000. A small first-in-human study would come next, and if successful, manufacturing would be scaled so that all SPG52 children can access treatment, an effort that could require up to $6,000,000.
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<div>Please donate today and share Leo's story. Your support gives us hope &lt;3.
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Flo Lock

Matt & Beth Weaver

Ramon Ballester III

Marjorie Salem

Kathryn Rheaume

Rajus Chopra

Tracy Horn

Cristian Martinez

Kevin Coad

Kirk Lintern

Anonymous

Loren Bass

Cory Smith

Fabiola Garcia

Antonio Belda

Karina Llanes

Masha Zilberman

Help Leo Fund Life-Changing Gene Therapy (CURE SPG52)

Help Leo Fund Life-Changing Gene Therapy (CURE SPG52)

Still $332,197 to go. Help us build momentum.