Update - September 2010: Emily Rose Furlani (5/2/1987 to 9/22/2010) Sweet Emi has joined her big sister, Liza. Their souls are free and they are singing and dancing and running and playing. We love you Emily Rose!
To add your thoughts or song dedications, join "Tea for Emily" on Facebook.
Update - July 2010: Elizabeth Susan Furlani (9/15/1985 to 6/16/2010) The best thing that ever happened to me was being chosen to nurture my 2 beautiful spirits that chose to come through me and Ricci. It has been an honor to have them in my life. So many have learned so much from them. Thank you Liza and Emi.
To add your thoughts or song dedications, join "Songs for Liza" on Facebook.
Update - August 2006: The girls are in! We'd like to thank all who have helped us up to this point! We've still got a ways to go, but our girls are moved into their No Place Special and we couldn't have done it without all the help you gave! — The Flying Furlanis
About Elizabeth and Emily
Please Help Us Build "No Place Special"
Meet Elizabeth and Emily Furlani, two beautiful healthy children. That's what we thought until they both starting walking on nothing but their toes. So at the ages of 8 and 6 we took them to an orthopedic screening held at Falmouth Hospital by the Shriners Hospital for crippled children. It was here that two young doctors noticed signs of a rare genetic disorder called Sanfilippo Syndrome. Elizabeth and Emily were tested and within a month were officially diagnosed with Sanfilippo Type D. With no health insurance at that time, the Genesis Fund picked up the initial tab, but social workers advised the girls parents to seek Mass Health coverage because there would be many doctor's bills. We (Ricci and Sue) did as we were told and got the girls insurance through the state.
Sanfilippo is a disorder that is progressive, and claims its victims little by little until they are gone. There is no cure and the only treatment that is available is for the symptoms, behavioral, joint pains, deafness, blindness, etc... Eager to spend as much time with our children as possible, dad closed his jewelry business and became self-employed doing whatever he could to help Sue and the children. With an average expected life span of 11-14 years, we do as much as we can to keep the girls happy and healthy.
Elizabeth and Emily are now 20 and 19. Emily has a very difficult time negotiating the stairs, is incontinent, does not sleep well at night, and has lost her speech. She is also legally blind but can still see well enough to enjoy her videos. Although Elizabeth is hanging in there pretty well, she too is slowly losing the battle.
Our goal for our girls is to keep them in our home and out of a nursing home. The bathrooms and bedrooms in our existing home are too small to be made handicap accessible so we are planning an addition with bedrooms and bathrooms that "Liza and Em" can use forever. We have borrowed some money but need additional funding and help to make the dream of keeping our wonderful girls with us. Thanks in advance to anyone who feels that they can help us.
Love,
Ricci, Susan, Elizabeth and Emily Furlani
a.k.a. "The Flying Furlanis"
Contact No Place Special
Richard Furlani: 508 495 4349
To contact the Furlani's, send your email to: sfurlani@noplacespecialhouseconcerts.com
NPS House Concert Series
