Brooklin Konczak care and family expenses

Brooklin was born march 18th, 2020. She spent 12 days in the NICU at Methodist hospital due to feeding issues, poor weight gain and Jaundice. Brooklin has always been a noisy breather but it wasn't until multiple trips to the pediatrician and 3 ER trips that she was finally diagnosed with her condition. Brooklin spent about a week in OSF NICU where she was diagnosed with Laryngomalacia at 2 1/2months old. At 3 months old brooklin was referred to ENT and she underwent surgery to correct her defect. Prior to the surgery Brooklin suffered with lots of feeding, breathing and choking issues. She was also seeing physical therapy and speech therapy for feeding therapy on a weekly basis. When she ate she would choke and gag on every single bottle to the point where she was starving and needed to eat but just couldn't..she started to lose weight and fall off her growth chart. She would cry constantly because she was so hungry but wasn't able to maintain nutrition properly due to her condition . During these choking episodes she would struggle to breathe to the point where she would often gasp for air and turn blue or pale. Brooklin had recurrant Stridor and has always sounds congested due to this condition. They say typically kids will outgrow laryngomalacia on their own but as weeks passed it was clear that her symptoms were only getting worse and that she was not improving. On June 18th 2020 Brooklin underwent a Bronchoscopy, Laryngoscopy and a supraglottoplasty. The surgery was to officially diagnose the severity of the laryngomalacia and to repair the floppy tissue above her vocal cords in hopes to open up her airway so that she would be able to not only eat better but breathe better as well. She had an extensive 4 day stay in OSF PICU after her surgery due to increased pain and swelling in her throat. The swelling in her throat started to cause her oxygen to drop down so they had to start her on a steroid to help keep her airway open. Brooklin was discharged home with medication... 3 days after she was discharged Brooklin stopped breathing. I frantically picked her up and started patting her back while we waited for 911 to come. Brooklin was transferred by ambulance to OSF where she has spent 5 days in ICU and intermediate care. She was having recurrent apnea episodes and after many tests she was diagnosed with survere acid reflux. Her reflux is so survere that it is causing her to stop breathing. She is also aspirating on her acid reflux. Brooklin has since been started on numerous medications to attempt to control the reflux and also medications to help with the inflammation in her throat. So far the medications seem to be helping. But if they stop helping her next step would ve stomach surgery to correct her reflux. The surgery needed is very high risk with many bad side effects. Currently brooklin is admitted at OSF children's Hospital in peoria IL where her mother has been staying with her 24/7. Due to her condition brooklin will need lomg term physical therapy, speech therapy and ongoing care. Her mother hasn't been able to truly work her business due ti multpile hospitalizations with brooklin and her father has missed lots of work due to her being sick as well. They are now behind on multiple bills and are asking for help. If you are unable to donate please just pray for them as They get through this difficult time.

UPDATE 9-5-20

Unfortunately Brooklin was MISDIAGNOSED and does not have laryngomalacia but has a terminal illness called Spinal Muscular Atrophy type 1. We are now fighting for her life daily ❤️ she was dosed with Zolgensma (gene replacement therapy) a few weeks ago. She currently ramains inpatient in Chicago where we do daily breathing treatments/physical therapy/occupational therapy/speech as we try to perfect her daily routines. She also had a NJ tube placed as we await gtube/nissen surgery for her survere reflux. She also has since started bipap treatments. PLEASE keep her in your prayers.

I have been posting frequent updates following the 9-5-20 update above so make sure you scroll through the entire updates section to get 100% up to date on this storyNatalie Bomke from FOX news Chicago has done several news stories on our sweet baby as well❤ you can view those just by searching her name: Brooklin Konczak on google.

On August 14 2020 Brooklin was one of the FIRST BABIES IN THE NATION to recieve a revolutionary treatment called Zolgensma aka GENE REPLACEMENT THERAPY. It saved her life. And while there is still NO CURE for her disease... She is doing things today that we were told she would never do! We were told she wouldnt live past 6 months of age, she just celebrated her 1st birthday in March 2021. We were also told she would never eat by mouth, roll over, talk, crawl or walk.... While mostly tube fed... She CAN NOW EAT 2 OZ A DAY ORALLY!!!! SHE TALKS SO MUCH!!! & HER LAUGH WILL WIN YOUR HEART❤ SHE IS SERIOUSLY ALWAYS SO HAPPY. SHE ALSO JUST STARTED ROLLING OVER FULLY LAST WEEK. we are so incredibly thankful to god and her care team at luries childrens hospital in Chicago as well as her primary care team here in peoria. I will continue to post updates on this go fund me in the updates section for anyone who wants to follow her journey. Every single day she is here is a blessing. We live life one day at a time with so much gratitude. 

I have also reached out to the ellen show in hopes to get Brooklin on her show and spread awareness for her disease to get all 50 states to add SMA to the newborn screen. I pray my daughters story helps get babies tested at birth globally and that her story saves lives. I dont want any other baby misdiagnosed and being treated late like brooklin was. She lost so much function in those 5 months

We are also still trying to desperately raise funds for a handicap accessible vehicle with A wheelchair ramp. Our vehicle is no longer fesiable the bigger she gets. She is getting very hard to physically transfer and transport. Any donations on this page to help us with that are so appreciated. My husband (brooklins daddy) was also just diagnosed with renal cell carcinoma, kidney cancer at age 31. He just had surgery to remove it and is out of work for a while...donations will also help us financially during this time to help us pay our bills such as (rent, water, electric) if you are unable to donate and help us please just share this go fund me so that more people see it. Thank you everyone and god bless each and every follower/supporter we have. 

UPDATE: 10/3/22

I have been continually updating the updates section on My daughter and her condition but I forgot to update here as well. Brooklin is currently admitted at OSF children's hospital on Peoria where she has been on life support for 28 days. She was admitted for Respriatory failure following Rhinovirus and Parainfluenza type 4. It has been a down hill battle since she was admitted. We attempted to extubate her last week and she collapsed her lungs requiring emergency re intubation. Brooklin isn't getting any better and hospice was consulted on over the weekend. The Drs here feel stuck and do not think they can successfully extubate her off of the life support. They want a second opinion on her care from somewhere who is more specialized in her disease. We wanted to transfer her to Luries in Chicago because that is where all of her specialists are and we see them every 3 months at MDA clinic however Luries hasn't had any beds available in the PICU. At this time our only option is Luries doesn't open a bed is to transfer her to either Wisconsin or st Louis where they are more familiar with her disease. Currently all donations received will go towards our immediate family traveling with her life flight wherever we have her transferred. We are currently in need of help with gas expenses, lodging expenses for her dad and sister (I will be staying in her hospital room but sister can not) , food expenses and whatever else may come with us making this transfer. Brooklin is in critical condition and she will be a high risk transfer so she will be life flighted and we will have to drive seperately. I have received tons of messages and so many prayers and I just want to say that we are so greatful for all of the support we have received. I will continue to post updates in the "updates section" on her condition. I also post frequent updates on my personal Facebook page for anyone who is wanting to follow there as well. (Angela Konczak on Facebook).

Angela Brooklins mommy