<div>We're the Lockard family, and we are fundraising to help cure both of our children, and all children, of a devastating ultra-rare degenerative genetic condition called SPG50. Without intervention, Naomi and Jack will slowly wither away, losing the ability to use their body and their mind. We have to do something to save them from this fate. 
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<div>NAOMI &amp; JACK
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<div>Naomi was born in July 2021 and immediately became the center of our universe. Her big blue eyes and beaming smile made challenges with breastfeeding and hip dysplasia seem miniscule. We noticed her struggling to meet developmental milestones as early as two months old, but her pediatricians shrugged us off and chalked the concerns up to the worries of first-time parents. By six months old Naomi was far behind her peers developmentally, and she started physical therapy to help her catch up. Progress came slowly but surely. However, in December 2022 her therapists recommended additional testing to pinpoint what was causing her delays. 
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<div>On May 12, 2023, exactly four weeks before her brother was set to be born, the world fell out beneath our feet: Naomi was diagnosed with SPG50. It was caused by inheriting two mutated copies of the AP4M1 gene – one corrupted copy from each parent. And that meant that Jack had a 25% chance of being affected too. 
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<div>Jack was born in June 2023 and we sent off his genetic test kit two days later. For weeks we agonized over every movement he made – did he have it, or would he be the lucky one to escape the condition? In early July Jack landed in the hospital after aspirating formula. As we sat in the room watching him struggle to breath on his own, his genetic test came back: positive.  
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<div>WHAT IS SPG50?
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<div>SPG50, and related conditions SPG47, SPG51, and SPG52, manifests through significant developmental delays in all areas. Affected children learn to move, talk, and play vastly slower than their peers. These children work endlessly, making slow but sure progress towards their next milestone. Then, cruelly, the disease begins to take it all away. Children begin developing spasticity, or stiffness, in their feet. It climbs up their body, leaving them wheelchair bound due to paralysis. It causes severe to moderate cognitive delays and many children are unable to communicate. Scariest of all, the lifespan for an affected child is between 20-30 years. Naomi is just over two, and she has already lived nearly 1/10th of her life.    
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<div>SPG50 is caused by mutations in the AP4M1 gene that lead to the inability to create a protein that is necessary for a proper functioning AP-4 protein complex. SPG47 (AP4B1), SPG51 (AP4E1), and SPG52 (AP4S1) have similar outcomes. 
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<div>There are less than 100 known cases of SPG50 worldwide. Naomi and Jack are currently the youngest children diagnosed and the only diagnosed kids in Colorado. Parenting any child with a disability is tough, but ultra-rare conditions are even more challenging and isolating. There are no annual walks to raise money for a cure, no local support groups, no symbols for awareness. Affected families are spread far apart and left to learn to manage the disease mostly alone. Our children’s doctors learn about the disease alongside us, or, in some cases, from us. Yet, we remain connected to those who share our circumstances - parents who feel grief and loss not only for their own children, but those who came before and those who will come after. 
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<div>TREATMENT
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<div>In spite of all of the negativity, there is HOPE. A fellow parent, Terry Pirovolakis, refused to accept that there was no treatment. He has worked tirelessly to raise money and develop a gene therapy to treat children affected with SPG50. He started a pharmaceutical company, Elpedia Therapeutics, that has worked with experts around the world to develop Melpida, a gene therapy to treat children with SPG50. 
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<div>The FDA has approved Melpida to be tested in a clinical trial at the University of Texas Southwestern. Through this trial children will be given healthy copies of the gene through a lumbar puncture. The theory is that the healthy gene will take over where the faulty gene failed. The hope is that the disease progression will slow considerably or even stop completely. 
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<div>We hope and pray that Naomi and Jack will both be selected to participate in this potentially life-changing treatment. 
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<div>WHY SHOULD I DONATE?
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<div>Gene therapies for rare diseases are expensive. Major pharmaceutical companies don’t develop treatment because the profit margins are slim. Fundraising comes from the people who need an option to exist – parents like Terry (Cure SPG50) or Mike and Devin (Jack’s Corner Foundation). Each child treated in the clinical trial will cost roughly $500,000. We are joining in the fight to fundraise a substantial amount of money to fund treatment for this horrifying condition. 
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<div>WHERE WILL MY MONEY GO?
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<div>We are primarily fundraising to help fund the Melpida clinical trial. We would also like to donate to other treatments being researched and developed for the AP4 diseases. Finally, some of the money raised will be used to help offset the excessive costs our family faces due to the disease. Naomi and Jack both have extensive medical bills due to the condition. The tools and devices (ex: gait trainer, speech generating device) used to improve their quality of life are not always covered by insurance. We spend 2-4 hours a week in therapies and 4-10 hours a month in medical appointments, which often leads to missed income. 
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<div>WHAT ELSE CAN I DO?
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<div>If you have thoughts, questions, or ideas please reach out to us – we would love to hear from you! If you are able to donate, please contribute what you can. Every penny is a step closer to a treatment for all children affected by SPG50. You can donate on this GoFundMe, or if you would like to donate directly to a 501(c)(3) you can donate at <a href="https://www.jackscorner.org/naomi-and-jack" target="_blank" rel="noreferrer noopener">Jack's Corner Foundation</a> (<a href="https://www.jackscorner.org/naomi-and-jack" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.jackscorner.org/naomi-and-jack</a>). And please spread the word! 
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<div>WHERE CAN I LEARN MORE?
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<div><a href="https://www.jackscorner.org" target="_blank" rel="noreferrer noopener">Jack’s Corner Foundation</a> 
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<div><a href="https://www.curespg50.org" target="_blank" rel="noreferrer noopener">Cure SPG50</a> 
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<div><a href="https://www.elpidatx.com" target="_blank" rel="noreferrer noopener">Elpida Therapeutics</a> 
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<div><a href="https://cureap4.org" target="_blank" rel="noreferrer noopener">Cure AP-4</a> 
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<div>NAOMI AND JACK TODAY
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<div>Naomi and Jack are the light of our lives. Naomi recently learned how to get into sitting on her own, and she expects everyone in her presence to clap each time she does so. She is babbling consistently and refers to her brother as “ba-vah.” She has a smile that lights up the world and is incredibly opinionated and strong-willed. Jack has found his voice and coos loudly to get attention. He loves to look at high contrast items and is obsessed with ceiling fans. He can roll onto his belly but needs help to roll onto his back. They are happy children who, like all children, deserve every opportunity to live full and fulfilling lives. Thank you for your support in helping us achieve our dream of giving Naomi and Jack a wonderful experience on this Earth. 
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Richard Toya

Anonymous

Linda Grizzard

Richard Byram

Martin Bonin

Michelle Roiger

Paul Wackrow

Kate Hilby

Jean Boonstra

Naomi and Jack Battle SPG50

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Naomi and Jack Battle SPG50

Still $824,650 to go. Help us build momentum.