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 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.  

Posted on December 13, 2016

Posted on December 13, 2016

Skip to the last bullet point if you just want to read about Gideon's fundoplication, bronchoscopy, feeding tube placement, and umbilical hernia repair that will occur tomorrow December 13th.

So, a lot has been going on the past several weeks here at the Perkins' household: 

-Lynn is making progress recovering from her ankle surgery in August.  She is mobile now and making progress with physical therapy, but still has periods of a lot of ankle pain.

-Andy had a vein closure done on Friday to start dealing with the varicose veins he has inherited from his dad and grandmother.  The procedure was a peace of cake compared to what Lynn and Gideon have been through so hasn't complained...much.

-We have postponed the hand surgery for Niam to separate his didactic fingers.  We were incredibly unhappy with the attitude and lack of respect for us as parents when we met the hand surgeon.  He couldn't give us a real good medical reason to do the surgery now except that, 'He needs 5 fingers...he'll be made fun of...he won't be able to do certain things.'  While it is true that his skin will graft/regrow easier now and that neurologically he will learn to use his fingers now, we could do it at a later date.  We will wait until find a hand surgeon we like, and until Niam shows more interest in having them separated.

-We are finished with the 6 months of IV stereoids for Gideon.  The last month was incredibly tough emotionally for Gideon with periods of sobbing and incredible frustration/anger.  Those emotions are largely gone now as the stereoids are out of his system.  We meet with the pulmonologist in early January, but it appears that we won't be continuing steroid treatment for his lungs as the PFT's don't really show any evidence of improvement.

-We have been fortunate enough to have met a pediatric surgeon, Dr. Curnow, who is all you could want in a doctor guiding you through some complicated decisions.  He has reviewed Gideon's case and consulted with other pediatric surgeons to determine if reflux could be a large contributor to Gideon's lung issues.  We have had evidence of reflux and aspiration into the lungs since 2013, but nobody has made a strong case for doing a fundoplication to stop the reflux.  An upper GI last Thursday showed such strong reflux that Dr. Curnow believes a fundoplication to stop the reflux is necessary to protect Gideon's lungs.  It will also help him nutritionally during this critical time of puberty.  He has seen many cases where aspiration of stomach fluid into the lungs causes many issues, and fixing the reflux improves quality of life dramatically.  

Dr. Curnow has been exceptional at walking us through the decisions, possible complications, and overall just being understanding of everything we have been through.  He's not promising a cure or fix to Gideon's lung disease, but he is giving strong hope that Gideon will start eating and growing again normally, while protecting his lungs from possible further damage due to aspiration.

So tomorrow Gideon will have a fundoplication (tying esophagus and stomach to prevent reflux), a rigid bronchoscopy to take biopsies of esophagus and look for other complicating issues, a feeding tube placed, and fixing his umbilical hernia.  The  feeding tube will be used for several months, and if we find that Gideon is eating fine without it then we will remove it.  He will be in the hospital for 3 days.  He is at peace about it all and looking forward to catching up in weight and height to his peers.  

Pray for us as this has all happened quickly.  We are hopeful and optimistic, but doubt and fear always reside as we have been through many dead ends.  

Financially this has been an expensive year medically.  Fortunately (or unfortunately depending upon how you look at it) we have met our maximum out of pocket expenses so Gideon's surgery should be covered 100%.  We have about $6,000 dollars left from previous fundraising.  I'm sure this will be used up quickly as the new medical year starts.  While we are not in critical financial need, any continued financial support helps. We continue to be blessed with a great support system helping us with child care, meals, housecleaning, and overall emotional support.  

Andy and Lynn Perkins

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