Nathan's Batten Battle

$7,034 of $10,000 goal

Raised by 93 people in 7 months
Thank you to everyone that has taken the time to learn more about the Stacey, The Hiltman Family, Nathan and Batten Disease.

Nathan was born to Stacey and Jay Hiltman in 2004. He was a healthy, happy, and active little boy. It wasn't until he was five years old when they noticed his vision was deteriorating and his behavior was changing. By age seven, he was completely blind.

Stacey knew in her heart something was just not right and she went on a search to figure it out. It wasn't until over a six year period with a multitude of doctor appointments, hospital stays and specialists, and finally DNA testing that they were able to get to the bottom of it. She finally received the most heartbreaking news any Mother could ever hear about their child. It was a diagnosis she wouldn't wish upon anyone. It was a diagnosis that brought her to her knees and would test her faith and strength.

On June 10, 2015, when Nathan was 11 years old, he was diagnosed with Batten Disease. There is NO treatment, there is NO cure, it is always FATAL. His life expectency is only into his late teens or early twenties.

Batten disease is a rare, inherited disorder that begins in childhood and is fatal. There are less than 400 children in the world with Batten Disease. Children with Batten disease suffer progressive neurological impairment, which includes, visual impairments/blindness, seizures, personality and behavior changes, dementia, loss of motor skills and the ability to walk, talk and communicate.

Even with the most devastating news, Stacey is still determined to do whatever she can to make the best of Nathan's life, her family and herself. She always says that she wants his life to matter, to mean something and for every person who leaves meeting him to be touched in some way.

Stacey is the most fantastic, caring, dedicated, proud, protective mother I know. She loves her children with every ounce of her soul. The day she heard the devastating news, her world shattered in an instant. The reality has set in over the last three years as she has lost pieces of Nathan slowly. Stacey knew Nathan would start to lose abilities at some point however, that does not make it any easier on them. This has been a very difficult journey for the entire family. When I see Stacey, I can see and hear the pain and fear in her eyes and in her voice. She seems so strong, yet so fragile at the same time. She lives in a very isolated world and feels that Nathan has been forgotten about.

Her days are very long and far from easy. Nathan can spend his entire day screaming and hitting himself with nothing that will work to calm him down. This is just one symptom of Batten and one that is very hard to live with when you are caring for him. Stacey does have CNA care to assist with Nathan. Unfortunately, Nathan is so challenging is has been difficult to keep them on staff. They do have one who has been their saving grace through all of this. Stacey is barely hanging on and needs prayers, support and love from all her friends and family to help her get through each day.

Recently, Nathan suffered his first seizure while walking up the stairs. This presents an unsafe situation for him. Fortunately, they have a main floor bedroom, but it is not set up for Nathan's needs. They would need to expand the hallways to fit his wheelchair and would need to re-do the bathroom to be handicap accessible. They would also need to make the bedroom bigger to allow more room for Nathan to be more comfortable. An update to accommodate Nathan on their main floor is a necessity and would be such a blessing.

Most importantly, please pray for peace. There is so much uncertainty that Stacey needs to feel that things will be ok. Prayers also for a strong marriage to sustain them in times of great battle.

To follow Nathan’s Battle journey you can go to https://Facebook.com/sothathecansee or www.sothathecansee.com

For more information about Batten disease please visit www.bdsra.org
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GoFundMe has asked that I post an update and let everyone know how Stacey and I are related and where the funds from this are going.

Stacey and I have been dear friends for nearly 25 years. I set up this GoFundMe to help with the expense of remodeling their home for Nathan’s safety and to cover any expenses they have due to Nathan’s illness.

Every penny from this GoFundMe is being directly deposited into Stacey’s bank account that she set up for Nathan.

Thank you to everyone that has supported them through prayer, love, and donations. I hope you all know how much you are appreciated and that your donations are directly helping the Hiltman’s.

Much love to you all!
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$7,034 of $10,000 goal

Raised by 93 people in 7 months
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