Dustin is a 16 year old precious boy with Autism, who was just learning how to drive…….
and has just been diagnosed with an extremely rare vasculitis autoimmune disease called Granulomatosis with polyangiitis (GPA), formerly known as Wegener’s granulomatosis (or Wegener’s disease).
It is rare in adults, but extremely rare in teenagers.
Dustin lives with his mom, Jen, in Huntsville, Alabama.
He is her ONLY CHILD and her whole world!
His father is not in his life by his own choice. But Dustin does have the most amazing Uncle Chad and older cousin Trevor as great male role models!!
Nana is Dustin’s elderly disabled grandmother, who also lives with him and his mother.
Jen is a United States Navy Veteran and registered nurse who is taking care of her mother and now her critically ill son.
Jen had just recently accepted a new position as the Quality Assurance Nurse at a Veterans Nursing Home in Huntsville, and has not worked enough hours yet to qualify for FMLA.
Jen has one sister (only sibling) who also lives in Huntsville and works as a nurse at Redstone Village Memory Care with dementia patients.
Her sister is married and has 4 children and helps Jen as much as she possibly can. They are very close.
Jen and Dustin are active members of the Journey Church of the Nazarene in North Huntsville.
This is Dustin & Jen’s support system.
She needs help and any assistance, advice, prayers, support she can get would be honored and greatly appreciated.
This bombshell came out of nowhere and has rocked this family to its core……. because they never thought anything like this would happen to them….
They are Christian church-going people who live peacefully to help others and are law-abiding citizens who love to give back to their community and that’s why both sisters became nurses and never believed they would be taking care of the rare medical needs of one of their babies.
Dustin is the sweetest of all the kids, and the other kids will even admit that!
He loves to help people, but he’s very shy. He’s never hurt a fly and he’s such a gentleman…… he doesn’t deserve this at all, and the family still can’t believe this is happening to him, of all people….. why him?
He’s so sweet and innocent and special because of his autism. So smart and unique and just God’s gift to his mother and grandmother who absolutely adore him and depend on him as much as he depends on them!
PLEASE !!! If nothing else, just share his story!!
This disease is so rare, the rheumatologist at Children’s Hospital in Birmingham said he is the only teenager in Alabama who has been diagnosed this year.
This is Dustin’s Story……..
He had been sick for over a month, since around January 24th, 2026.
We thought it started as a sinus infection that wouldn’t go away despite multiple rounds of antibiotics.
Tuesday, 1/27/26:
Jen (Dustin’s mother) takes him to his doctor because his right ear is stopped up. He’s been having sinus issues since January 24th. Dustin says his ear is worse at night, but gets better in the morning. They tried cleaning it out, but nothing was working. The intern at his doctor’s office said it was just allergies and prescribed Flonase.
** At some point between 1/27/26 and 2/8/26 Jen took him back to his doctor who prescribed Amoxicillin because he wasn’t getting better and started running a fever.
Sunday, 2/8/26:
Dustin feels so sick and weak that he was unable to do his chores, so his little cousin, Averlie did all his chores for him. Jen ends up taking him to Crestwood Emergency Room because he has developed a very bad croupy cough and has lost his voice. He’s still running a low grade fever. They prescribed Levaquin and believe it’s still a bad sinus infection and that the drainage was making him cough. They sent him home the same night.
Tuesday, 2/10/26:
Nana (Jen’s mom and Dustin’s grandmother) took Dustin to Crestwood Emergency Room because his ear started bleeding! They said his eardrum had ruptured and he has pneumonia. They gave him IV fluids and prescribed yet another different antibiotic and sent him home the same night.
Tuesday, 2/17/26:
Nana took Dustin back to his doctor today because he’s still running a fever and his sinus symptoms and cough are getting worse. They drew some blood and decided it was a viral infection and it just needed to run its course and they took him off the antibiotics.
Wednesday, 2/18/26:
6pm: Jen takes a video of Dustin laying in bed with a pulse oximeter on his finger. His O2 is 91% and his heart rate is 150. When he stands up his oxygen level drops and his heart rate increases. He’s still running a fever, has a croupy cough and no voice.
7pm: They arrive back at Crestwood Emergency Room and have to walk across a big puddle of blood in the lobby floor that hasn’t been cleaned up and then some man suddenly stands up and begins stripping his clothes off.
8pm: Jen decides to leave Crestwood and takes him to Huntsville Hospital Pediatric Emergency Room instead.
They perform a CT scan and find mass lesions in both lungs. They begin testing him for multiple different things including TB (Tuberculosis). They said it’s possible that they may even have to do a bronchoscopy and get a biopsy of his lungs.
Thursday, 2/19/26:
3am: They perform a scrotal ultrasound to rule out cancer. The radiologist said he has seen these specific types of mass lesions in lungs before in testicular cancer.
4am: The scrotal ultrasound is negative for testicular cancer. Now the doctors think it’s either a bacterial, viral or a fungal infection.
7am: All of the viral tests are negative. They draw more blood to test for Salmonella because he got a chameleon for a pet about a month ago. He also has 3 rescue dogs and two rescue cats, so they are also looking for toxoplasmosis.
They take nasal swabs and sputum samples to send to the Mayo Clinic and now have him on O2 via nasal cannula at 2 liters per minute. His heart rate is still extremely high….. and he is begging his mother to just take him home.
9am: They start him on IV Rocephin and said if this antibiotic doesn’t work then they will do a lung biopsy. We asked why Rocephin instead of Azithromycin, but never got an answer to that question. We also asked why no steroids and was told because of his heart rate.
10am: He’s still running a low grade fever and now he started coughing up blood.
11am: The doctors inform us that he will be in the hospital for at least 3 days.
Friday, 2/20/26:
They now believe it could be toxoplasmosis. They still have IV Rocephin and IV fluids going, and still no steroids. He’s still on 2 liters of O2 and has not coughed up any more blood.
Saturday, 2/21/26:
10am: They started him on an anti-fungal medication because they added histoplasmosis to the list of suspects. He’s doing better with his oxygen but his heart rate and respiratory rate are still way too high.
2pm: His numbers (O2, HR, RR & BP) are getting bad again and he has another fever. He has been on broad spectrum IV antibiotics (Rocephin) since he was admitted with absolutely no improvement. He has been on the IV anti-fungal medication with no improvement yet. Now his arms have developed an unknown rash.
3pm: The rash has now spread to his feet and legs.
5pm: His aunt (Jen’s only sibling) and uncle bring his cousins to visit and they brought balloons, candy and stuffed animals which helped to lift his spirits. He was able to eat some Little Caesars pizza for dinner.
Sunday, 2/22/26:
12am, midnight: He spikes a fever of 101.6 which is the highest it’s been so far. His heart rate and respiratory rate are extremely high which is causing the monitors to alarm nonstop. At this point we believe he is on the wrong medication and they are treating him for the wrong diagnosis. He is very scared he’s not going to get better and every breath he takes is a gasp. If he lifts his head his respiratory rate gets better, but his heart rate gets worse…. and it’s vice versa if he lays his head back.
1am: His heart has been running a marathon for almost 3 weeks pumping so fast and hard trying to keep oxygen flowing to his organs. His biological father has a congenital heart condition, so Jen has told the doctors all about it and they are saying he absolutely does not have any congenital heart defects.
6am: He just woke up and started to jump out of bed and run for the bathroom and Jen had to stop him and remind him he was hooked up to IV’s and monitors and that he needed to use the urinal because his output was being measured.
12pm: He’s been looking and acting like he feels a little better and he’s been eating and drinking and doing his incentive spirometer. However, he’s also spiked another fever and his breathing and heart rate are still all over the place. His oxygen saturation is hanging in the mid 90s.
1pm: He seems to be way worse at night and his doctors only come around in the day. His doctor just left his room. They know he does not have TB but they are still waiting on test results. The doctors think the most likely thing is the histoplasmosis. Jen asked about why he would get that if his immune system was good and if he needed to be checked for some kind of immune disorder because they run in our family. The doctor said that this is an isolated incident at this point and no evidence to support running an immune panel. The doctor also said that we’ve probably all gotten histoplasmosis at one time but our systems all deal with it differently and for some reason his is taking it hard.
Basically it’s still a waiting game and the doctor said hopefully we’ll hear something on Monday when business opens back up.
If this is histoplasmosis and they are giving him the right anti-fungal, we want know why he is still running high fevers?
Does an anti-fungal medication not kill it off and stop the fevers within 24 hours, or is that just the gold standard and he’s too infected so it’s not going to work like that and it’s going take longer? So many unanswered questions at this point and we are still thinking these doctors have no idea what they are trying to treat and are just throwing medications at him. We are scared, frustrated and exhausted.
Monday, 2/23/26:
7am: Dustin had a rough night. He ran fevers all night and has one all this morning. His IV came out and they had to stick him 4 times to get a new one in because he is so dehydrated. They ended up putting it in his wrist and he was trying to scream but he has no voice and no air to push out the sound. This was extremely hard to watch! His urine is very dark. They turned his IV fluids down to 40 even though his urine is dark and his veins are getting harder to find. His oxygen started dipping back into the 80s last night as well. At this point we are having conversations amongst ourselves about having him transferred to a different hospital.
2pm: He has taken a dramatic turn for the worst! They bumped his O2 up but he’s still dropping to 90/91. He’s running another fever and his eyes are blood shot. The nurse came in here and said he has to get up and walk around and it took him a good 10 minutes just to get to the side of the bed because he was coughing so bad and he’s so weak! When he got to the edge he almost threw up. His heart rate and respiratory rate shot up through the roof and his O2 dropped to the 80s. They still have not heard anything from the Mayo Clinic, but an infectious disease doctor came in and said they would be changing his antibiotics. She said it takes anti-fungals longer to start becoming effective.
9pm: They bumped his oxygen up again to 3 liters per minute. They did another chest xray and it showed worsening pneumonia. They changed his antibiotics to cefepeme and vancomycin (still no azithromycin and still no answer as to why not) and they turned his fluids up to 100.
By this point, Jen is running on fumes! She stays with him all day and night, his Nana comes during the day, and his aunt comes and fills in for Jen to go eat or take a shower or go feed their animals.
He is never left alone. For some reason he is being allowed to run a fever without treatment if we don’t stay on them about it. They have refused to be proactive about not letting him get a fever. They want to know if he’s going to get a fever so they won’t go ahead and give him Tylenol ahead of time.
Tuesday, 2/24/26:
7am: His IV occluded again last night and it took 4 sticks and an ultrasound machine to get a new one. He also had a massive nose bleed out of both nostrils. (He has been having really bad nose bleeds for the last few years and his doctor just thinks it’s allergies). Thankfully a male respiratory therapist was out at the desk and followed a nurse into his room because his O2 tanked as Jen was trying to stop the bleeding. Jen is so tired and weak from lack of sleep it was taking all her strength to just pinch his nose. The respiratory therapist took over and seen him struggle with his breathing and then told the doctors he needed chest compression therapy.
He only has the Histoplasmosis test still pending because all of the other ones they have done have came back negative.
They have still not drawn an autoimmune panel, even though that is what we (his family) are almost positive is what is going on with him!
We seriously believe it is something called GPA, and even though it’s extremely rare….. it’s the only thing that makes sense at this point! Our family is prone to autoimmune disease and almost all of us have some form of one.
8am: They turn his oxygen up to 3.5 liters per minute because his O2 is still in the 80’s to low 90’s and he’s still struggling to breathe.
9am: They turn his oxygen up to 4.5 liters per minute and have decided to send him to the ICU. (OMG FINALLY!!!!!)
10am: They put him on a bipap ventilator and he is in Pediatric ICU Room 3.
12pm: Since he arrived in the ICU, he has a one to one nurse, a nurse practitioner to the unit, a respiratory therapist to the unit, and a coping therapist who will follow him until he is discharged all surrounding him to decide the next step in diagnosing and treating him. The ICU doctor has a doctor from Children’s Hospital in Birmingham with her has who come in to check on him too. They are still working with the infectious disease doctor and are finally bringing in a pulmonologist.
6pm: We are still asking and pushing for an autoimmune panel to rule out GPA.
7pm: We explain to his nurse why we believe this is a type of autoimmune vasculitis and convince her to advocate for him.
8pm: The nurse came back and told us she asked the doctor about Wegeners (GPA) and that they said they will do a full autoimmune panel tomorrow and that it was now one of the things they are considering.
Jen said she remembered asking the doctor in the ER about this possibility being an autoimmune disease and the doctor blew her off.
Now we really think we finally found the right group of doctors to help Dustin!
Wednesday, 2/25/26:
9am: They take him off the bipap to do a high flow O2 trial run to see if his lungs can handle it. They also started Toradol for inflammation and pain, but still no steroids yet. Even his nurse is pushing the doctors to please start him on steroids!!!
11am: They perform another head, neck and chest CT and started him on Doxycycline.
And they FINALLY did an autoimmune panel (specifically a ANCA), which will take a few days to get the results.
1pm: They have decided not to do a bronchoscopy because he is not stable enough to tolerate it. They put him back on full bipap and FINALLY start him on steroids!! Along with Azithromycin and IVIG. They discontinued the Doxycycline.
2pm: They officially diagnose him with organized pneumonia.
Thursday, 2/26:26:
10am: He can’t keep his O2 above 90% on full bipap
11am: They moved him to Pediatric ICU room 6 because it’s bigger and have decided to intubate and put him on a mechanical ventilator.
We are devastated and extremely upset because we have been pushing for steroids and an autoimmune panel for days now and we feel like they waited too long to listen to us and now it has come to this.
1pm: They sedated him, intubated with full mechanical ventilation, inserted a central line, NG feeding tube and Foley catheter and a dose of furosemide.
This has been the worst day so far!!!
They are having to suction him frequently as well as give him breathing treatments. When the sedation begins wearing off and before they push more through his IV he begins gagging and fighting the tubes down his throat. This has been excruciating for his family to watch him go through.
His mother, nana and aunt all stood by crying and feeling so helpless watching him struggle.
Friday, 2/27/26:
7am: They finally performed a bronchoscopy.
The results showed no granulomas and no blood, just severe inflammation. The doctor said they would know more when pathology came back.
They had to give him a paralytic because he was clenching his jaw.
8am: They gave him a blood transfusion because his hemoglobin levels are dangerously low.
9am: They have decided to go ahead and consult with rheumatology because they believe his lungs are already improving since he has been on the anti-inflammatory drugs (steroids, IVIG).
4pm: The autoimmune panel (ANCA) results are back……
And they now OFFICIALLY DIAGNOSE HIM WITH WHAT WE SUSPECTED A WEEK AGO!!!!!!
Saturday Morning 2/28/26:
Jen is told Dustin needs to be flown by helicopter to Children’s Hospital in Birmingham for treatment. We are currently awaiting for his transfer while knowing his support system is in Huntsville and Jen will have to miss even more work to go and stay with her only child.
Saturday evening, 2/28/26: Dustin is life flighted via medical helicopter transport to Children’s Hospital in Birmingham, Critical Care Unit, Room 1231.
Please donate to help during this difficult, emotional, stressful time to ease some of their financial burdens….. the recurring bills are already piling up and the medical bills have yet to hit them……
or at least please SHARE Dustin’s story.
Thank you!!!
And God Bless You!!!