Hope for the Pownall/Demasi Family

$31,135 of $50,000 goal

Raised by 590 people in 5 months
Hi everyone! I am creating this fundraiser page for my sister Robin Pownall & her family in hopes to help them during this difficult time. On October 14, 2017 she gave birth to 33 week old premature twin baby boys named Santino "Sonny" & Giovanni "Gio" Demasi.

We were so excited to add 2 new additions to the family but then we were hit with some bad news. Both twin babies had been diagnosed with a rare immune disease called Chronic Granulomatous Disease aka CGD. 1 out of 500,000 a year are diagnosed with this disease.
It is a very dangerous immune disorder and makes them highly succeptable to germs and infections that can be fatal if not treated properly & promptly. 

My sister and both twin babies Santino & Giovanni are inpatient at Chrildrens Hospital of Philadelphia & will not be coming out of here for a few months when boys are strong enough to go home. BOTH twin babies need a Bone Marrow Transplant to be cured.


We found the match!!! Their big brother Michael [4] is a perfect sibling match to both twins!!!!!! How incredible he is going to give his bone marrow to save his baby brothers' lives. What a brave young man.

It has been a very tough time for my sister & our family but I figured i would try to help in any way I can. I really hope we can come together as family, friends and a community to help a great family who is desperately in need.

The money we are raising for the family is going to help them get through this awful time (months in the hospital) & hopefully help them get back on their feet and into a home of their own . They were in the process of looking to move but had some setbacks once the children were diagnosed . They are staying with family right now but need to be in their own place to bring the babies home after transplant. They also only have one vehicle which Michael uses to work so my sister will also need a minivan to get to and from all of their hospital visits & the post transplant visits that will last at least a year. We will also be using the money to help get bracelets made & throw a possible event.

If you can please share & kindly donate even just $5 if we all help out to reach our goal i know it will take a little ease off of the family at this time and they can finally be a family and live a normal life.

Most importantly please continue to pray for Santino and Giovanni through this journey. Also our entire family since we are all deeply affected. I will do my best to continue to keep everyone updated on how the boys are doing & any changes there may be.
Thank you all for your prayers ,support , donations, kind words, encouragement, etc.
Blessings to all!
Follow our journey @ my sisters Facebook page her name is Robin Lynn (Pownall).


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Hello everyone . It’s been awhile since I’ve updated but wanted to thank everyone for the support . The twins transplants was successful . They finally left the hospital on May 1st and are doing very well . Xo
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Hello Everyone :-)
Today was a beautiful day . Michael did his procedure this morning for them to take the bone marrow cells . He is perfectly well , playing and all like nothing happened . Giovanni received the bone marrow cells around 2:30 pm & then Sonny received the bone marrow cells around 5:30 pm. Both babies are doing well and sleeping . Now is time for their bodies to heal , with the new bone marrow cells to build up a healthy immune system . Let’s all keep positive & pray it continues to go well and as expected . Thank you all for the continued prayers & support . Much love xo , Casey
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Hello everyone
I just want to post on here to let everyone know how the boys are doing . They both have finished their 10 days of chemo , levels look good & are doing well . Tomorrow is the big day “ transplant day “ . Please keep the twins & Michael in your prayers. Thank you all for the support .
Much love ,
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Update for everyone!!! Both boys are separated in their own room on transplant floor...they start their chemotherapy tonight at 2am. Continue to pray and support our family through the next few weeks. We appreciate you all much love to all & God bless xoxo
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$31,135 of $50,000 goal

Raised by 590 people in 5 months
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