Hello family and friends,
We are reaching out during an incredibly challenging time for our family, two of our beautiful daughters, Madisyn Hope (10) and Delaney Grace (6), have been diagnosed with Sanfilippo Syndrome, also known as MPS IIIB or childhood Alzheimer’s.
Sanfilippo Syndrome is a very rare, progressive, and terminal genetic disorder that primarily affects the brain and nervous system. Children with this diagnosis are unable to properly break down certain sugars in the body, causing toxic buildup that slowly damages the brain over time. As the disease progresses, children lose developmental skills such as speech, mobility, memory, and the ability to perform everyday tasks independently. Children with this devastating disease face severe sleep disturbances, behavioral challenges, seizures, and increasing medical complications. At this time, there is no known cure.
As parents, we are doing everything we can to fight for our girls and give them a happy and healthy life. Funds raised through the Hope and Grace Support Registry will help us pursue alternative therapies and medical treatments that are available out of state and at high out of pocket costs. These therapies offer opportunities for improving quality of life, slowing progression, and giving our girls every possible chance as research continues to advance.
Recent medical advancements through extensive research have led to clinical trials and gene therapy for children affected by Sanfilippo Syndrome as soon as 2027. Alternative therapies currently available to help reduce neuro-inflammation are important to combat the affects of this disease to maintain brain function for as long as possible. For the first time there is a real chance to combat the damage done by MPS IIIB and hopefully some day a long term cure. Funds raised will help support medical expenses, therapies, travel costs, adaptive equipment, home modifications, and the daily needs of our family as we walk this difficult road together.
Your kindness, prayers, generosity, and support mean more to us than words can express. Every donation, share, and message of encouragement helps lighten the burden and reminds us that we are not alone.
We humbly ask that you consider supporting our family in any way you can. Thank you for loving our girls and standing beside us through this journey.
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- 'Follow' Updates to stay informed about Madisyn and Delaney's journey and how you can continue to support them.
Words of Support
Donate, send meals, or lend a hand to include words of support.
Willington Education Association
Ally McConaughy
Reg and Judi Parady
Brenda Pat and Sean Stenglein
Therese Codino
Lori Sherwood