Support The Vulpi Family's Fight against ALS
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Hi!
Starting this Go Fund Me was something I never thought we would have to do because we hate to ask for help but would jump in to help anyone who needed it. Several family members have suggested setting one up so family and friends and friends of our families can help us. Which we greatly appreciate.
On August 7th 2023 our family got the devastating news my husband of 13 years at 48 years old was diagnosed with ALS. I was heartbroken for our family a future that is so uncertain a never knowing what will come next.
I made an appointment for Patrick with the ALS Clinic at HSS in NYC for August 15th and we met with several doctors and by the neurologists exam she determined she was 95% sure it was ALS. She wanted to do a brain MRI and some more nerve and muscle tests to be 100% sure. On our follow up visit on October 3rd the neurologist informed us that the MRI along with the bloodwork and nerve and muscle test determined without a doubt Patrick does indeed have ALS. Within 7 weeks of our first visit the doctor advised us that Patrick's muscles have become weaker she also did a pulmonary function test on October 3rd and determined his breathing wasn't good and was ordering a bi-pap(ventilator) machine for Patrick to use at home 3-4 hrs a day and for a powered wheelchair since walking isn't really an option at this point. Patrick also had to do a swallow test to see how food and liquid were going down. Liquid is a challenge and food while it does go down his body is working harder than normal to get it down.
I am ready for anything and everything this disease is going to throw at us but what I wasn't expecting was the medical cost of all this considering what I thought I had was good health insurance. The cost of the bi-pap machine is $105 a month. We also need to lease a wheelchair accessible van which will be at the very least $450-$500 a month. Getting a physical therapist and occupational therapist in the house to help Patrick with stiffness he is experiencing is also costly. Lastly as Patrick progresses even further with this disease I will need to take unpaid leave from my job to help him even more than I do already and that could put us in a financial situation we never thought we would be in. No amount of money we have saved would have prepared us for something like this.
As most of you know our daughter Emma for the last 4 years for her birthday instead of asking for gifts for herself Emma has collected money and gift cards to purchase toys for kids either sick in the hospital or living in shelters because she has realized even at young age there are kids out there less fortunate then her and for that we are extremely proud. She has been in Newsday, on Channel 12 News and on Eyewitness News Be Kind Campaign for her wonderful work. I have included some links to see all the good Emma has done over the years.
https://www.google.com/amp/s/www.newsday.com/amp/lifestyle/family/vulpi-birthday-toy-donation-winthrop-s57815
https://www.google.com/amp/s/abc7ny.com/amp/be-kind-east-meadow-nassau-county-new-york-city/5236111/
https://www.google.com/amp/s/longisland.news12.com/amp/east-meadow-8yearold-spends-her-birthday-raising-money-for-kids-in-the-hospital-42414334
I want to show Emma the good you put out comes back in some form or another and we have had so much good already and we can never thank everyone enough we will be forever grateful for those who have stepped up in our time of need.
We THANK YOU for taking the time to read our story and if you can donate we Thank You any amount small or big is truly appreciated always. If you can't we understand totally and ask to keep us in your thoughts.
Organizer
Michele Vulpi
Organizer
East Meadow, NY