Brave is medically complex, diagnosed with epilepsy, chronic lung disease, a compromised immune system, hypotonia, hypothyroidism, hearing loss, MBL deficiency, hypoalbuminemia, an aberrant left subclavian, sensory processing disorder, laryngomalacia, obstructive sleep apnea, nystagmus, chronic constipation, global delay, mild airborne allergies, farsightedness, estropia (under treatment), pulmonary stenosis (basically resolved), brachycephaly (treated), Paroxysmal Tonic Upgaze (resolved), Infantile Spasms (resolved)
Surgeries: Suppraglotoplasty & Adenoidectomy with Grommets, Other x1 (Emergency), Biopsy, Gastrostomy, Laparotomy, Tonsillectomy & Adenoidectomy with Grommets, Circumcision (Orchidopexy scratched) and two stays in pediatric ICU.
Tests & Procedures to date: CT scan (x3), Sleep Study (x5), Barium Swallow / Flouroscopy (x6), Bronchyscope (x2), Chest X-Ray (x5+), Blood Tests (x50+), Echocardiogram (x4), ABR (x1), EEG (x3), Titration (x2), Drip (x6), Central Line (x3), Intubation (x1), nasogastric tube 4 months, PEG/Mic-key button 20 months, ankle foot orthotics 1 year, Starband helmet 7 months, CPAP 18 months, Oxygen 2 years (6 months 24/7), ACTH High-Dose Treatment 1 month
*****Follow @bravetumelo on Instagram for updates on his journey*****
BRAVE'S MEDICAL JOURNEY (UPDATED TO 2021)
Brave is on a complex medical journey involving lots of challenges and expenses.
31 May 2018
Brave was born at 38 weeks gestation and struggled to feed, presenting with low blood sugar.
At nine weeks old, he was officially diagnosed with Trisomy 21 (Down Syndrome). This genetic condition comes with a lot of potential problems, a lot of testing, therapy, and early intervention to give a child the best possible future. Not all kids with Downsyndrome have medical complications, but Brave has had lots so far.
Feeding and breathing challenges since birth meant that he immediately started speech and occupational therapy and underwent extensive testing (hearing, sight, heart). Further hearing tests included and ABR and CT Scan. It was found that he has hearing loss in the right ear (partial deafness), and consequently he got a bone anchored hearing aid (AUD6k+).
Brave has two heart defects: a small ASD and a congenital narrowing in one of the arteries called pulmonary stenosis. He must see the cardiologist yearly (AUD300) for assessment. After 3 years, it looks like Brave's ASD and pulmonary stenosis have resolved by themselves. The cardiologist wants to do a transesophageal echocardiogram where they use a camera to look inside the heart to confirm the resolution of these defects.
Brave was diagnosed with intraesophageal reflux (not normal reflux, a unique reflux caused by dismotility of the esophagus). This condition is hard to treat and causes daily vomiting and aspiration (when fluids and/or foods go into the lungs). He drank chronic medication for it until the placement of his NG-tube. Aspiration continues to be a problem.
Brave was found to have moderate obstructive sleep apnea when a sleep study was done on him at around 4 months old. He needs a continuous positive air pressure (CPAP) machine, but the ones that are small enough for him to use are hospital grade and cost AUD11,5k+ so Brave has gone without a CPAP for now. Once he weighs more than 30kg, we can try and get him the CPAP meant for older kids and adults. Hopefully the surgeries and treatments we are busy with now will help the sleep apnea resolve, although we have been warned that many children with Trisomy 21 will have sleep apnea even after the surgeries.
Brave got his CPAP just before COVID-19 and has been using it whenever he sleeps since then. It has helped him sleep much better and have a healthier, happier life.
At six months, Brave was diagnosed with infantile spasms. A complex, rare disease - epilepsy that causes neurological damage. Brave’s skills regressed. IT WAS HORRIBLE. I have no other words. He spent an extended period in hospital (AUD8,2k) and underwent a horrendous treatment (AUD3,6k) that, luckily, stopped the spasms. The treatment involved two injections a day for a month of ACTH and then multiple medications to manage all the symptoms arising from the treatment like really high (dangerously high) blood pressure. In this time he stopped smiling, lifting up his head, and expressing himself at all. Parents whose children have IS describe it as a loss of personality.
After this treatment, Brave went onto other medication that has strong side effects (Vigabatrin). He began to experience head drop seizures and another medication (sodium valproate) was added to the mix. The head drops disappeared, but later on absence seizures (petit mal) began to be observed.
Today he is still drinking seizure medication to ensure his seizures don’t return and that he doesn’t develop other types of seizures. He struggles with occasional absence seizures. In 2020, he suffered a massive regression along with a surge of seizure activity, but his last medication adjustment (December 2020) seems to have helped ease the frequency of seizures down to maybe one every two weeks.
Brave received an orthotic helmet (AUD3,8k) for brachycephaly (meaning his head is misshapen and regular repositioning treatments have not been effective) at 10 months old. He wore the helmet for 7 months and saw marginal correction. Although his head isn't necessarily as round as we'd like at the back, it is now within safe margins.
On a follow-up brain scan (eeg) in hospital, it was found that Brave has chest infection and constant low oxygen saturation levels (as low as 60%). As a result, more tests ensued and it was found that Brave has enlarged adenoids, is in need of grommets for extremely small ear passages, and has congenital defects on his larynx (abnormal skin on the larynx) causing major obstruction with breathing and contributing to the sleep apnea he was diagnosed with at a younger age. Specialists also believe it contributes to the reflux and aspiration issues.
Since then, Brave had many surgeries to help with the above and many treatments. Currently, doctors say his lung damage is much less, and his tonsils and adenoids aren't obstructing his airways anymore. The suppraglotoplasty for laryngomalacia was unsuccessful, but doctors feel there is no need to operate, since Brave is breathing better now (unless he is sleeping)
He underwent 1h30m surgery on 20/03/2019 - the day before WORLD DOWNSYNDROME DAY - for all three of these procedures. After six days recovering in hospital, Brave continued to regress and was turning blue while on high oxygen. A chest scan confirmed that he has severe double pneumonia which was being aggravated by even more aspiration after his operations, swelling in his airways, and continued buildup of fluids in his airways.
He was rushed back into surgery where the specialists attempted to clear his airways (AUD6,1k). He also received a nasogastric tube for any liquid he needs to have (Water, milk, medication) to avoid any further aspiration. He also received the first of three injections for children with compromised immune systems called Synagis to protect against future chest infections and the RSV virus (AUD3,5k).
Since birth Brave has displayed multiple problems with his digestive system, including constipation, pain, gas, low pancreatic enzymes, and abnormal blood test results for kidney function and persistent low protein levels in the blood despite a high protein diet. Brave has seen multiple dieticians and specialists regarding these problems, but thus far we haven't resolved the issues. He drinks medication twice a day to help his bowel move currently. He is scheduled to see a gastroenterologist next week (AUD270), and once he is in hospital again he will see a pulmonologist too (we cannot pay for this, so we have to wait until he is in hospital).
Physical development comes with much weekly therapy, and Brave uses devices like the Happy Strap (AUD120) to assist with stability in the hips where he has hypermobility, to avoid hyperextension of the hip joints due to hypotonia. His delayed speech development and motor skills will benefit from developmenal tools like the Z-vibe (AUD100), a sensory play station box (AUD600+), a spandex hammock (AUD120), and access to Tiny Handz education for South African Sign Language (AUD100+). There are many more tools that he will need to aide his development, and each therapist comes at a cost of around AUD25-100 per session.
We would like to send Brave to hyperbaric oxygen therapy, which costs around R18,000 (AUD1800). He has been approved to go to school once he starts receiving Polygam infusions (monthly by drip). If we get approval for medical aid, his school feels will be around R6000 (AUD600) per month. This prospect is very stressful for us, since we can't afford the fees right now. Yet, he needs to go. It is going to be so amazing for him.
Brave sees a physical therapist weekly, an occupational therapist twice a month, a speech therapist once a month (this will change because of the surgeries to once weekly), and a Biokineticist twice a month. The other therapy we really want to send Brave to is swim therapy and music therapy.
Brave now sees speech, occupational, and physical therapists once a week. We want to be able to increase the frequency to 2, 3, or 4 times a week. We also want to send him to hippotherapy and aqua therapy. The only reason we haven't is due to funding. We have also been advised that a neurodevelopmental occupational therapist will also benefit Brave's unique needs.
Brave has seen a lot of specialists and therapists, and we have not attempted to track the accumulated cost of it all. He will need to see a Paediatric Neurologist in April, however, and they are scarce in our cities (2 in Pretoria, 6 in Johannesburg), so they are costly too (AUD300+ per hour).
Brave continues to see the pediatric neurologist every 3 or 4 months.
Today Brave is on permanent home oxygen and the ng-tube. He still has double pneumonia, which the doctors say will take around two months to heal fully (hopefully). Because of this, transport has become a real challenge. Mom and dad have a tiny car, and jobs that don't pay a lot. The machines are big, so if Brave goes anywhere only one of us can go with him. It's best that he doesn't travel right now, but we can't avoid the medical appointments. We pay medical aid monthly too, which sometimes helps with some of the costs (AUD800 per month), although unfortunately there is a lot they don't pay, and mom and dad have exhausted their savings.
Unfortunately, his medical costs will be ongoing throughout the next few years, until all these challenges can be resolved. His Down Syndrome diagnosis comes with a lot of testing and possible problems that may arise in the future like thyroid problems, leukemia risk, and a host of other things.
That is why we have created this Go Fund Me account with help from our Aussie Aunt Johanna Catharina (nickname: Rina) Joubert (THANK YOU). She will be collecting all the donations in Australian Dollars into an account she has created exclusively for Brave. So everything you give will go directly to helping Brave get better and grow to his full potential with all the help he needs.
Despite all the challenges so far, Brave defies the odds and continues to reach milestones and smile his way through each obstacle. He has inspired us all with his strength and courage. Please help us pay his medical bills and give him the life he deserves.
WHO WE ARE AND USE OF FUNDS:
I am Joy Cronjé, mommy to Brave. My husband and I, along with friends and family are running this fundraiser. We are from Centurion, South Africa. Brave is our second-born, and his sister is seven years old. Our Aunt Johanna Catharina Joubert (affectionate nickname Rina) a family friend and former South African who relocated to Rockingham, Australia, is helping us collect funds for Brave because it is not possible to raise funds using GoFundMe with South African currency and a South African bank account. You can check us all out on Facebook or Instagram if you're curious.
She was generous enough to open an account exclusively for Brave in her name with Westpac (Australian Bank). She has added my husband, Antwan, as a co-user with access to this account. This means we will be able to access all funds in the account to pay for Brave's medical bills, as Westpac is connected with a bank in South Africa, making it easier to withdraw funds and pay for bills.
We will start with the outstanding bills that already exist, like the R63K bill for the ENT who performed multiple surgeries on Brave. We also owe bills to various therapists and specialists. Some are as small as R250 (AUD25) and some are as much as R18k (AUD1800) We're awaiting a second bill for Brave's most recent hospitalisation, surgery, and series of tests, which we will also need to pay. Further, he needs to see the paediatric neurologist, pulmonologist, and other specialists this month (not confirmed, but possibly immunologists? this is part of why it's tricky putting a number on his bills. We keep getting new ones). We will keep you updated on his medical journey, who he sees, and the costs involved. Currently we need to start speech therapy (AUD50/week), and he gets oxygen refills at R140 a pop every two weeks or so (AUD14). He's drinking a lot of medication too. It all adds up. Please message me if you have any questions.
I have tried to put an estimation together of costs that are not paid yet, remembering that some specialist appointments or hospital bills are still coming.
Medical Aid - AUD800 x 12m = AUD9600
Oxygen - AUD14 x 26w = AUD364
ENT (surgery) - AUD6300
ENT (follow ups) - AUD3000
Speech - AUD50 x 26w = AUD1300
Occupational - AUD25 x 12m = AUD300
Paediatrician - AUD200 x 5 = AUD1000
Audiologist - AUD150
Physical Therapy - AUD40 x 12m = AUD480
Gastroenterologist- AUD270 x 3 = AUD810
Hospitalisations and tests (incl anaesthetist and other specialised test people whose names I do not know) - AUD17000
Medicine, Medical & Therapy Equipment (current) - AUD1000
Medicine, Medical & Therapy Equipment (still to get) - AUD3000
Paediatric Neurologist (x3) - AUD1200
Other specialists (dietician, immunologist, pulmonologist, pathologists, etc. x12m) - AUD4500
2021 - THIS LIST HAS SINCE CHANGED. WE TRY TO SEND UPDATES ON THIS CAMPAIGN REGULARY WITH NEW TESTS AND EXPENSES.
DonationsSee top donations
- Kama Pike
- Abdur Zahid
Fundraising team: Team Brave (7)
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