Help Gideon Fight Chronic Lung Disease

For: Gideon Perkins
Organizer: Andy Perkins
Help Gideon Fight Chronic Lung Disease (Gideon Perkins)
of $100,000 goal
50% Complete
Raised by 246 donors

The Story

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We are a family of 7 in Boise, ID, with 5 wonderful young boys aged 12, 11, 9, 7, & 4. Gideon is our oldest.

Many of you have heard about Gideon's health problems, supported us in so many ways, and even asked if you can help us financially. We've created this site to help keep you posted and to create a venue for those who wanted to help us face the financial aspects of treating Gideon.

For the past several months Gideon, 10 yrs old, has struggled with even just moving from room to room without getting out of breath.  He had lost a great deal of weight and though he gained some back, maintaining weight has been a struggle as he has been in pain, constantly nauseous, and nothing is appetizing. His weight got so bad having a feeding tube put directly into his abdomen has been discussed. He got progressively worse until mid-November when we took him to the ER and weren't sure he would make it.  He spent over a week in the hospital and underwent numerous tests including a bronchoscopy that revealed massive amounts of mucus in his lungs due to an infection. The infection is currently being treated with a month-long round of antibiotics.  A CT scan showed bronchioestasis which indicates permanent damage to his lungs and a chronic condition.  Cystic fibrosis and TB tests were negative so we don't know what is the underlying cause nor his long-term prognosis.

We have had several trips to Cincinnati Children's Hospital to help diagnose the underlying cause, clarify his long-term prognosis, and create a care plan.  So far, we don't not have any answers. We will going again in the next few weeks for a more extensive lung biopsy.  The suspicion is that his immune system is attacking his lungs for some reason.  They will take a about a 1x1x1/4inch section of his lung.  Depending upon what they find, we may be looking at several weeks of IV treatments to stop his immune system from attacking his lungs.  

We have also met with a lung transplant specialist to explore that possibility if IV treatments don't work.  This is a last resort as 5year survival rate is at 50% right now.  Not fun to think about, but something we must consider.   

Gideon is currently at home with oxygen and equipment to treat his lungs throughout the day. Our hopes are to have him as mobile as possible, strengthening the muscles that have become so weak over his months of illness.

This site gives you the chance to help us cover medical expenses and this trip to Cincinnati. 

Don't forget to Subscribe for Updates.  Please feel free to share this link as well.  There are widgets on this page to help you do both.   

Fine Print stuff: does not charge a fee because it is run by donors.  However, Paypal charges 2.9% + $0.30 for each transaction, whether you pay with a Paypal account or a credit card.  So, if you give $100, we actually get $96.8 of that.  In any case, we are grateful for any amount donated.
-You do not need a Paypal account.   You should be able to pay with a credit card. If you have issues please email us at [email protected]
-You can always mail a check if you prefer.  Use the Contact button to send us an email and I will give you our physical address.  

Andy and Lynn Perkins
Gideon, Isaac, Phineas, Atticus, & Niam

Fundraiser Updates

Posted on April 24, 2018

Posted on April 24, 2018

It's been a whole year since we've updated, and that last update was to report Gideon spending his 14th birthday in the hospital with pneumonia. 

This past Saturday Gideon turned 15 and he spent it at home! 15! 

The biggest change in the past year for Gideon was addressing his pectus carinatum non-surgically with a T-Joe brace.  We needed to get his chest cavity back to regular shape during puberty while his rib cage is malleable in order to maximize his breathing capability.  The initial appointment last summer. It was intense as the physical therapist spent nearly an hour intensely massaging Gid's chest to work it down over an inch. It was amazing to see the change in such a short time, but so painful for Gid that he was on heavy painkillers for nearly 3 weeks after.  It was well worth avoiding surgery on his chest.
Gid had to wear the specially designed T-Joe brace for months to keep the chest in shape. This made us very nervous. If you remember, the brace we tried back in 2013 was poorly designed and actually was probably what tipped his acid reflux into a very damaging situation for Gid's lungs. However, having addressed the reflux and using a better designed brace with a more knowledgable and attentive doctor, we had great success this time around. Last month Gideon was cleared to wear the brace only at night.  The difference in his chest is amazing to us still.

We've had over 250 supporters and $50k raised during the past several years.  I can't believe it still. I never would have guessed at those numbers.  Every gift and supporter dramatically changed our lives during the most difficult times.  Gideon still faces many challenges ahead, but we are very optimistic about the direction his life and health will take now. 

At this point if you are inclined to give and support us, we ask that you support one of Gideon's friends, Juliette Freeman, who is just now beginning her lifelong challenge with FAP.
Please follow the link below to support Juliette before July 31.  These early days are critical for moral and financial support while so much is unknown and she is seeking long-term answers.  Plus, the ability to give may end July 31 as Youcaring becomes merged with GoFundMe.  Thank You for the amazing support these past years!  Please continue supporting others. It does make a difference.

Posted on April 20, 2017

Posted on April 20, 2017

Yeah! Gideon turns 14 tomorrow! But Boooo..booo...booo... he'll be spending it in the hospital.  He's been fighting a bout of cold/flu/pneumonia and so we had him on antibiotics and steroids the past couple of weeks.  Monday he started complaining of serious back pain.  This was not characteristic of pain he had complained about before.  He's complained about stomach pain and we've been worried about his appendix.   A few weeks ago we tried to get a peek at it with an ultrasound with no luck. We had a CTscan scheduled for Thursday to find his appendix and make sure it wasn't inflammed.  It would explain the back pain.
Wednesday we were celebrating his 14th birthday at a Nerf War place with his friends.  He was in pain but really wanted to enjoy the party and even had a piece of cake 'on principle' even though he wasn't up for it.  The back pain got too much and he had to leave his party early to head for the ER.  Ughhh...what a crappy way to have a birthday party.  
A CT scan did not reveal his appendix.  It appears to be nestled in his colon somewhere.  The doctor is concerned about his urine analysis and wants to take his appendix out, BUT the CT scan also showed pneumonia in his lungs.  So, we have to do heavy IV antibiotics to clean up his lungs so that they are in a good state to do an appendectomy.  We don't know how long he will be in the hospital.  But he will for sure be spending his 14th birthday there.  He is maintaining good spirits, but we sure would imagine things differently for him.

On the positive side, he is gaining weight now thanks to the fundoplication last December.  Two steps forward, one step back.  I was actually considering closing this fundraiser down a few weeks ago.  But now I don't know.  We are just taking one day at a time again.  Trying to keep all the family together and dealing with this in a healthy way.  Please keep us in your prayers, especially Gideon's brothers who are tired of seeing Gideon have to keep facing medical issues.  

Here is Facebook post from Lynn:
Just hanging in the ER with my favorite almost 14-year old. emoji unicode: 1f494 He was scheduled for a CT scan tomorrow but because his pain and nausea were getting so bad he had to leave his birthday party early to head in to the ER to go ahead and get it tonight. He has many health issues already including only 25% lung function as well as stomach and growth issues requiring a g-tube. Lately not only has he been fighting pneumonia, but he's been dealing with extreme stomach and back pain. The doctor wants to rule out appendicitis and try to figure out what's causing the pain so here we are.
It stinks but as I sit here with this guy I'm super grateful for his heart and the way he's allowed all he's been through to soften him rather than make him harder. He's a genuine, grateful, quirky young guy and I'm super grateful to be his mom.

Posted on January 11, 2017

Posted on January 11, 2017

2017 sure has had an interesting start.  Boise is experiencing a record 15" of snowfall over the New Year.  My Maine blood is loving it and most people are enjoying the experience of a real winter, but the city sure isn't prepared to handle it.  We have been hunkered down in our cozy home and enjoying the extra time as a family.

Gideon's fundoplication surgery on December 13th went well.  During the post-surgery discussion with us, Dr. Curnow said the shape of where Gideon's stomach met the esophogus made it obvious as to why he had reflux and surgery was the only way to fix it.  No amount of diet or lifestyle changes would have helped.  This reassured Lynn and I that we had made the right choice.   Even better, over the next several weeks Gideon has made comments like 'Did you know reflux burns?' and has had several good discoveries about how eating should feel, including that burps aren't supposed to have solid content!  

We did have some serious setbacks as Gid contracted C. Diff at the hospital. Dr.Curnow was proactive and had us begin three doses of probiotics a day as soon as he heard of Gid's severe stomach symptoms. He also had Gid tested for C. Diff early just in case, even though the chances of it being that were slim. Obviously it DID end up being C. Diff, and we're grateful we began getting Gid's gut bacteria back into order early, because his symptoms are under control and he's gained several pounds of weight back, which is no big deal for him!

Gideon's attitude has been excellent through his recovery and dealing with the psychological and emotional changes of having a feeding tube.  It has been nice not having the pressure of making him eat.  The incredible feeding supplement we use is called Liquid Hope, and it literally has been Liquid Hope.  He has expressed having increased self-esteem and confidence because he feels like we have finally found a way to help him grow and answer some of his medical issues.   The plan is for him to eat more solid foods over the next several months and wean off the feeding tube.    We pray that 2017 is the year Gideon puts on good weight, his lungs recover enough capacity to make illnesses less stressful, and that we can look back on this time of suffering as one of great personal and family growth.

Thank you for your continued interest in our family and support.  Lynn and I are horrible at sending out appropriate Thank You's, but know that every note, comment, letter, gift, and smile makes a difference to us.  

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