Help Josh Fund

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Help Josh Fund

This page is to help me, Josh, and my family both financially and emotionally. Every cent helps! Josh is a 16 yr old boy awaiting a double lung transplant.

We have an ongoing fundraiser to help pay for all of my medical, transportation, and living expenses. He was born with scids a condition that made him unable to make his own t-cells in his immune system. He received a bone marrow transplant of mom's t-cells in the hope it would create a fully functional immune system. The cells live and work great in Josh. However they never accepted Josh as their own body. They do not work with the other parts of his immune system so he's unable to make antibodies. For this Josh receives an all day iv infusion every 3 weeks of gamma globulin (antibodies). THAT'S THE EASY PART!! Only days after transplant GVHD started in Josh. GVHD is the transplanted cells seeing his body as foreign so they attack it. He has had a long battle with gvhd. It has attacked his skin causing painful lesions and loss of all skin color and right now he's painfully fighting off several skin cancer sites with a chemo cream. It has attacked his eyes causing glaucoma and cataracts, his GI tract causing colitis, and recently his lungs and possibly his liver causing the need for lung transplant. Josh has had a long tough 16 yrs. We've stayed optimistic through it all and always make the best of things. We are a loving, caring, hardworking family. Through it all we've never had to ask for help. This battle though is really taking a toll. Josh has several machines to help him breathe. We make frequent trips to Boston Children's Hospital. We have many out of pocket expenses to care for Josh at home while he waits for new lungs. Mom has had to leave work to stay home with Josh. Dad works 60 hrs a week but it all has really taken a toll on the finances. We finally need to reach out to caring people. We truly appreciate any kind of support. Donations, prayers, even just a positive comment on the page is appreciated and can really make a difference in this amazing kids life. Thank you all!

18/07/2015

Great news call from docs today! Aspergelious is gone from joshs blood, mostly gone from lungs and abscess in brain much smaller!

17/07/2015

Enjoying a beautiful afternoon outside.

05/06/2015

We had planned on bringing Josh home today now that his seizure med has been changed, his blood tank is full and all of his electrolytes are in Josh normal range.... He had an mri of his brain today that showed a small abscess in the left side of his brain.. He will be staying for the weekend so the drs can see what kind of infection it is and hopefully it is something that can be treated with medicine and he can be back home next week..

27/05/2015

Went without internet for a while so haven't been able to post Josh updates.. He is still at home getting stronger every day. We have gone a whole month without needing an unplanned hospital visit! The last time his sodium was low we were able to correct it at home. Josh is up out of his room all day everyday, interacting better and eating again! He's had a lot of visits from family this week which was great for him cause seeing mom all day is getting old.. Idk why I'm pretty awesome.. Anyone that wants to come hang out with Josh just call the house. He's usually sitting around bored with mom trying her best to entertain him & get him up doing things to continue getting stronger.. Josh has come a long way, miraculously survived one critical illness after another. Now he is on a long healing road. Getting his strength back, getting multiple parts of his body to heal and start working correctly again. All the support we have received has helped Josh get this far. He is almost there!!

15/04/2015

5 days in the hospital to fill vampire Joshs blood tank.. Back home now took him a few days to settle back in. Going back to the hospital set him right back a bit.. Josh is doing great at home now. out of bed more and more talkative. Still not up walking around.. Hopefully he wont run out of blood again. He has a shot now 3x a week to boost his bone marrow up to make more blood.. seems to be working..

28/03/2015

Home for Birthday!!!

25/03/2015

Josh is doing much better at home! He's much more comfortable and less confused. He doesn't remember leaving the hospital or arriving home last Thurs. He sometimes thinks he's at the hospital when we remind him we are home he just says "oh yeah" At least he's not freaking out wondering when the heck we got here. His pain is better and a few of his complaints are completely gone. Its non stop work and expensive but I know this is what he needs to get better!!

19/03/2015

Little rough getting out of the hospital this morning.. 5 hrs of chaos at home.. mix ups, deliveries, 2 diff vna agencies admitting, new aid with shift change of another brand new aid.Recieving an o2 monitor but no sensors to be able to use it, a nurse expecting to just do some paperwork & leave not be here for hrs to set up iv that has to wait cause the fluid too cold but....JOSH IS HOME!!!!

02/03/2015

Things are moving fast now.. New plan.. mom is spending march 6-16th with josh learning his iv care.. going home night of 16th for rest & last minute set ups, back to boston on 17th for the night and coming home with josh on the 18th!! Hoping all goes as planned or at least very close..

21/02/2015

Good Morning!

We have been given a discharge goal date of March 23 or 24th!!

17/02/2015

As soon as we have everything at home set up josh will come home. We have decided to take care of him at home. Josh has been in the hospital close to a year and is still very sick.. We are trying to get him home before his birthday. His last bday was in the hospital.. it will be nice to have him celebrate his 18th bday home with friends. We have to learn his iv nutrition & meds. Somehow clear all the snow from our driveway. Our van needs repairs again.. we have to get hospital bed in here.. a generator.. a lot to do to get him home. Its where he needs to be.

01/02/2015

On Tues. some of josh's team members from boston will be coming to our house. We will talk about how we can have josh at home and what we need in place to have him here. Nothings definite but there's a chance we may bring him home soon..

Address

03230

Telephone

6037683144

Website

facebook.com

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