How Can I Help?

After I post about us having a particularly rough day or couple of weeks I often get a string of emails from people asking about how they can help. My recent post about my fear of the Internet prompted a string of these calls, texts, messages and emails. When you're in the midst of something and someone asks what they can do to help it can be difficult to step outside the situation and see where their time and efforts can be best spent. This is particularly challenging for me! Sunday mornings when we're scrambling to get out of the house for church and kids are running around half naked and I'm busy trying to pack the diaper bag, find church appropriate attire, make breakfast, get Olivia's meds together, find matching shoes, wash faces, brush teeth...... Mike will politely ask what he can do to help and I always snap back in a very impolite way...."PICK A JOB, ANYTHING! Jump in! Step up! JUST DO SOMETHING!". Sunday mornings are not a peaceful time in our house.
But I digress.

People ask how they can help Olivia, help with Sanfilippo syndrome, help our family. Here's a list of several different things, hopefully you will be able to find an opportunity that matches up with your interests and availability!

• SHOP! The mom of our friends, Waverly and Oliver has a friend who is a thirty one consultant Thirty-One. They sell great purses, totes, wallets, organizing items, etc. Super cute stuff, great prices and it can be monogrammed. 25% of all of the orders for my "party" will be donated to Ben's Dream (a family non-profit funding Sanfilippo research, specifically Dr. Fu's gene therapy research). This is a great way to get some cute new items/gifts and help us get closer to finding a cure.
  Here's the link http://www.mythirtyone.com/SarahGiere/, be sure to choose the party for Shannon McNeil. The orders will all be submitted at the end of the month, so your items will arrive in April. If you have any questions please let me know! The deadline for orders is 3/20/11 so place your order soon!


• DONATE! Fundraising has begun or the Duke Rainbow of Heroes Walk. The Rainbow of Heroes Walk is the major annual fundraiser for the Duke PBMT program. Money raised goes to support families and patients going through transplant. Here is the link to donate http://www.rainbowofheroeswalk.org/modules/gifts/donate.php please don't forget to select OPERATION OLIVIA as your team.



• BABYSIT! Olivia has frequent doctors appointments and Mike's schedule is such that I cannot rely on him for help. It is a challenge to manage both kids and have an intelligent conversation with a medical professional at the same time. For many of her appointments Olivia needs to have certain tests or xrays done and it's difficult to balance the needs of both kids.



• PRAY! Keep us in your prayers. Specifically pray for me to have patience, pray for more awareness, pray for a cure!



• SHARE! Share or story! Talk about Sanfilippo syndrome. You can raise awareness for Sanfilippo syndrome with each person you share our story with.

Hope you're able to find a way to help!