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Support Nathan's Cure and Treatment for Spastic Paraplegia

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Our son Nathan was born in September of 2017. He came in strong, weighing 9 pounds, 5 ounces with a full head of fluffy dark hair. He was a delight from the start, always smiling and easy to laugh. He grew quick, always maintaining his standing in the 99th percentile, and continued bringing us so much joy with his sweet smile and keen sense of humor.


Nathan was a little late to walk and his speech was developing slowly as well. He started speech therapy and was labeled as ‘cautious’ by the doctor. She assured me that his slow careful movements were nothing to worry about. I remember my concern when he continued to sit down and go backwards down the step into the family room. I remember being confused when he would exit our garage by crawling backwards from the concrete to the asphalt. These were little things, but to me they were signs. Nathan continued to grow and develop into the loving, humorous boy that we adore today but his mobility issues did not go away. Stairs, jumping, bike riding, and toe-walking were all an issue. Balance, coordination, and dressing himself were challenging. He was now in physical and occupational therapy, did a year of equine therapy, had two MRI’s and multiple specialists; all with no answers. He was first diagnosed with Developmental Coordination Disorder which helped explain some, but not all, of his challenges. We wondered why he tired so quickly, why his muscles were so tight, and why he continued to struggle keeping up with his peers and brothers.


In December of 2023, we received the results from Nathan’s genetic testing. We were devastated to find out that he has a genetic condition called Spastic Paraplegia Type 4. This is a degenerative genetic condition that causes progressive weakness and tightness in the lower body. It explained a lot and opened up a whole new world of questions. When will this condition come for him and his mobility? How badly will it affect him? Will he end up in a wheelchair? Will he be one of the ones whose upper body is affected as well? How long will he be able to do the things he loves? No one can answer these questions for us. This is a rare condition with endless presentations.


After meeting again with all of his doctors and reading up on this condition as much as I could, I came to a dead end. We will just keep doing what we have been doing and support him as best we can and when the symptoms come, we will deal with those the best we can. I read about the research being done but didn’t have much hope. Surely, it’s too far off. Surely, they wouldn’t finish the research in time to help my boy. I reached out to a few moms that I had come across along the way. There is another six-year-old boy in Canada who presents similarly. I recently talked with his mom who has been spearheading a great fundraising effort and she renewed my faith! There is promising genetic replacement therapy that is moving quickly to human trials! I am reserved, don’t want to get my hopes up, but she has enough drive and optimism for everyone… all they need at Boston’s Children’s Hospital is the funding to move forward with the research. Surely if we all band together we could raise enough money… which is what brings me here today. This research and this cure could be the key to keeping my child and so many others mobile. This could prevent my kiddo from slowly losing his mobility and from having to grow into adulthood in pain, discomfort, and under the shadows of paralysis. So, I am here asking you today for help. Whatever you can donate, whoever you can share this with, any help is so greatly appreciated. Money donated here will go directly to curespg4.org and towards treatment costs for Nathan.

With so much thanks,
The Salaban Family


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Donations 

  • Alex Dollinger
    • $25
    • 2 mos
  • Sean Joseph
    • $1,000
    • 2 mos
  • Judd Guldberg
    • $25
    • 2 mos
  • Sandy Tengler
    • $25
    • 2 mos
  • Laura Dulian
    • $50
    • 2 mos
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Organizer

Dani Salaban
Organizer
Grayslake, IL

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