has never left the hospital bed since January of 2017. She was immediately transported via ambulance as soon as she arrived in Canada; she has been in critical condition for several months prior to receiving her medical clearance and approval to fly.
***UPDATE on Hewlette Marielle’s Condition***
(Please be advised: Graphic images--Stevens Johnson Syndrome)
It’s been a roller coaster ride for Marielle and her family during the last 3 months in the ICU. We’ve had some good days, but unfortunately more bad ones. Complications have arisen that doctors didn’t expect due to her original diagnosis of End Stage Kidney Failure--many of which are dire. She was diagnosed with multiple infections in major bodily organs/systems, including her liver, lungs, spleen, and even cerebrospinal fluid. Due to these problems, doctors had to isolate her for a few weeks which only served to sadden both Marielle and her family. However, after three anxiety-ridden weeks we received news from Marielle’s doctors that her heart is slowly starting to recover, and that she is responding to medications designed to fight her multiple infections. Due to constant support from family, her wonderful doctors, nurses, therapist, social workers, and teachers, she was finally able to emerge from isolation stronger than ever, and we thank God that she made it through that harrowing period! On the day of her move everyone was ecstatic, as this was the first time since her admittance to the hospital that she was able to move around the hospital in a wheelchair. Despite being isolated from the world for so long, little Marielle showed an astounding will to live! Unfortunately, we were to find that this victory that we all had fought so hard for would be short lived.
The very night she was moved from isolation, Marielle started developing a full-body rash that was very itchy. As the evening progressed, she started to become very uncomfortable, and was unable to sleep due to the rash. The very next morning, the rash had turned a purplish color and started to devlop into blisters. All of her doctors were puzzled, as upon her move from isolation she seemed to be getting along very well. After much poking and prodding, and visits from various different specialists, she was finally diagnosed with Steven Johnson Syndrome--otherwise known as toxic epidermal necrolysis.
As a safety precaution, her specialist decided to stop nearly all of her medications except for the ones designed to help her heart, as this new diagnosis took precedence over any previous ones. During the entire time doctors were determining the cause of her toxic epidermal necrolysis, the blister’s Marielle had developed started causing her extreme pain. This shattered any confidence we had only a day before in Marielle’s health getting better, and everyone was in shock. Despite pain medications, and even her own mother’s attempts to carry and comfort her, Marielle’s pain would not subside. One of the major symptoms of this disease, other than the extreme pain, is a patient’s skin literally peeling away from their body. Unfortunately, Marielle’s mother found this out in the most frightening of ways. As her mother was attempting to carry and comfort her, Marielle’s skin literally started sloughing off and sticking to her hands, making it seem as if she was literally being peeled alive! Doctors immediately scheduled her for debridement, and shortly after she was taken to the operating room. Despite the intense pain and dire situation she was experiencing, Marielle still continued to show a strong fighting spirit. On the way to the O.R., she surprised everyone by thanking her doctors and asking her mother to take pictures/videos to show those family members not present that she is remaining strong despite her situation.
<iframe media_type="0" media_id="5Nf05GHgQc8" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/5Nf05GHgQc8/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
MARIELLE SINGS HER ABCs (Before SJS)<iframe media_type="0" media_id="La_1Q8O0-U8" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/La_1Q8O0-U8/?rel=0" frameborder="0" allowfullscreen="1"></iframe>We were initially informed that her debridement operation would only take one hour, however due to the unexpected extent of the damage to Marielle’s body, the operation ended up taking three hours. When she finally emerged, they immediately took her to the ICU, where family had to wait an additional 30 minutes before finally being able to see her. This was perhaps the most heart-breaking time, as throughout the 30 minute wait her mother could hear Marielle crying and calling out for her. When finally able to see her, family members couldn’t even try to hold her for comfort, as the slightest touch to her body would cause Marielle extreme pain. It has now been four days since the debridement operation, and Marielle’s condition has been up and down, consisting of fevers, high blood pressure, and excessive fluids to name a few. At the moment, Marielle is only able to accept a few medications designed to fight off the infections ravaging her internal organs, but she continues to remain strong. We know doctors and specialists are doing their best, and continue to pray to God that Marielle makes it through this. Marielle continues to amaze and inspire those around her with her positive outlook on life, despite the pain and suffering she has to endure. This little girl is the bravest soul we know and continues to smile, laugh, and love God, undeterred by her condition. She is full of hopes and dreams about her healing, and states that she simply wants to one day be able to step outside and play with her friends like a normal child. Everyone admires her strength and resilience, as well as her mother’s courage throughout this very difficult time. As quoted from a prayer book for the sick by her mother Lance, “
I declare that I will not look at what my eyes see, but I will look at what my faith sees.”￼￼
We ask that you please include Marielle in your prayers as she continues to fight to live through her illness. If you wish to give support via donation, please follow this link: http://www.gofundme.com/ne6zpe-hewlette-marielles-medical-funds
Every little bit helps, and will aid in giving Hewlette Marielle a chance to live. Thank you!
MARIELLE DOING HER ACTIVITY
￼Medicine may fail, but her faith in the Lord to heal her will prevail. In Jesus name, Amen! ***READ MORE ON MARIELLE'S BACKGROUND STORY BELOW***
**Can my international friends donate to my campaign?
Yes, they certainly can. Friends and family can donate to your campaign from all over the world using a major credit or debit card.
When they make their donation, they'll be given the option to select their country. This will generate the appropriate State/Country/etc. options for their credit card information.
Important: Your donations will always come to you in your campaign's currency. Your donor's bank will automatically convert their payment into the currency they use.
We do not charge any conversion fees, but your donors may want to check with their bank to see if they charge a currency conversion.****Background story on Hewlette Marielle's Medical Journey****
Hewlette Marielle is a 5-year-old very positive and bubbly kid. She was diagnosed with Nephrotic Syndrome at the age of 2, and from that time onward has constantly been in and out of hospitals. She has to regularly be seen by doctors every two weeks, is on more medication than any 5-year-old should be, and is constantly having her labs monitored--all of this so she doesn't become sick. Her condition has steadily gotten worse, and she is now suffering from End Stage Renal Failure. She has been on peritoneal dialysis for 4 times a day, every day, for over a year. The specialists who are now seeing Hewlette informed us that there was a migration of her dialysis tubing, and because of that her pancreas became inflamed and new infections formed in her abdominal cavity, causing her to spike fevers and experience excruciating pain. She was operated on to take out the infected tubing and placed a central venous line for hemodialysis.
Hewlette is now in Canada seeking medical treatment. She is looking for a chance to get on the transplant list and hopefully live a more normal life for her age. However, another complication was found 3 weeks ago and she was admitted in the hospital yet again. The doctors are saying that Hewlette has fluids in her lungs, making it difficult for her to breath. During this time, the doctors also found out that Hewlette’s heart has a problem and is not pumping blood adequately throughout body--her heart rate is around 170-200 beats/min. They told us that Hewlette’s heart is overworked, her coronary arteries are dilated, and she has developed thickening of the muscles of her heart. Hewlette was put on several cardiac drugs and is now intubated in the Cardiac ICU for Children in order to help her heart and breathing become less labored. The doctors are suggesting the possibility of putting her (a 5-year-old child!) on an artificial heart pump.
Hewlette was ordered to have full body scan/MRI to further study her heart condition and decide on her treatment plan. However, during the scans another unfavorable finding was discovered--part of her brain has been affected and is now somehow shrinking. Hewlette is being seen by a plethora of specialists, including cardiologists, nephrologists, dieticians, endocrinologists, and even a geneticist. All of them are puzzled by her multiple diagnosis.
Hewlette is very cheerful and high-spirited despite her grave diagnosis. She is a brave daughter, niece, friend, and sibling, and is very much loved and adored by her family. Her recent intubation has completely caused a change in her personality due to the pain she has to endure, and we are all hoping to make her comfortable so she experiences less pain and becomes more like Hewlette we know. We would like her to have a chance to live a life that she deserves. The 3 years of treatment this brave young girl has endured has, unfortunately, cause extreme financial burden on her family. We are humbly asking to include Hewlette Marielle in your prayers and give support by donating towards her medical funds.