Sanfilippo (also known as MPS-III) is the result of a defective gene Mickey inherited which prevents her body from making an enzyme essential to clearing metabolic waste out of her cells. Over time, the cells in her brain die from the accumulation of this waste.
The resulting symptoms are similar to Alzheimer's disease in adults. Children with MPS-III like Mickey gradually lose their abilities and eventually slip into a vegetative state until passing away, usually in their teenage years.
The Team Sanfilippo Foundation has a great explanation in more detail available on their website: http://teamsanfilippo.org/what-is-sanfilippo-syndrome
Pray. Good vibes, positive energy, love, and regular old prayer have helped us immensely already, and we'd appreciate it if you keep it coming.
Tell everyone you know, and their grandmother, about Sanfilippo. The research funds go to diseases people have heard of, and sadly as of right now, this isn't one of them. We need to change that.
If you're on social media, like the MPS society and the Team Sanfilippo Foundation. Not only will you get great updates on research, you'll help these groups show that the public is interested in these diseases, which will help us get corporate sponsorships and raise funds.
If you shop on Amazon, check out Amazonsmile.com and select TSF Incorporated as your charity.
Donate to help us advance the research and get Mickey treatment as soon as something becomes available, wherever and whenever that is. You can use the button below to make a donation via Paypal.
If you can't spare funds right now, but have a cool item or service you'd like to contribute, we are working on putting together a silent auction as well as raffles at the live events that are in the works. Please message us directly if there's something you'd like to contribute, and thanks!
Please note that this fundraising platform may suggest a "tip" in addition to your donation to support it's operations. This "tip" is optional, and can be removed in the blue box directly underneath your donation amount by switching the percentage to "other" and deleting the suggested amount.
She's awesome! She's the same happy little girl as always, playing with her friends and drums and making her art and impressive messes. Her mom & dad are going to keep it that way for as long as humanly possible.
We absolutely are. If you or a business you work for would like to help save Mickey and all the other kids with this disease, please shoot us an email. We can feature your logo on our website and at all of our events, and help promote your brand and business.
We aren't a 501(c)3, we're just parents. A portion of what we raised so far we've set aside for travel expenses (if we have to go far or long from home to save Mickey's life), and for medical expenses that aren't covered by insurance, but what we raise now we send to the Team Sanfilippo Foundation. If you need your contribution to be tax-deducible, please donate directly to TSF here: http://teamsanfilippo.org/donate
With MPS III being a progressive, degenerative disease, time is of the essence; We don't have the time to start a whole separate foundation in Mickey's name. We know TSF will get the funds towards the right research asap.