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Hi my name is Kelly. I'm the mum of 4 including my amazing and strong medical warrior daughter named Taiyisa or Taiy.
Taiy is 17 years old and lives with her family in Perth, Australia. She is a sister, an aunty and an amazing friend to all those around her. She loves mentoring and helping others. Taiy should be living a carefree teenage life hanging out with her friends and making summer plans at the beach!
Unfortunately Taiy became very ill just over 5 years ago, and we have been fighting for answers ever since she got severely sick just over 5 years ago.
Taiy’s medical journey over the last few years has been extremely hard on her, and our family as a whole. In 2021 she was diagnosed with Ehlers Danlos Syndrome (hEDS). EDS are a range of connective tissue disorders. In Taiy’s case her symptoms include sleep disturbance, fatigue, postural orthostatic tachycardia, functional gastrointestinal disorders, dysautonomia, anxiety, and depression. These other systemic manifestations may be more debilitating than the joint symptoms, often impair functionality and quality of life.
In November 2021 she underwent her first major operation (periacetabular osteotomy) to address her hip dysplasia. Hip dysplasia includes hip pain and restricted mobility. She then underwent an additional operation to remove the screws a year later.
In 2021 around the same time of being diagnosed with EDS, she was also diagnosed with gastro paresis and colon dysmotility which means the entirety of her digestive tract is partially paralysed.
Some of Taiy’s symptons included
* Chronic nausea
* Vomiting (especially of undigested food)
* Abdominal pain
* Abdominal bloating
* Body aches (myalgia)
* Erratic blood glucose levels
* Acid reflux (GERD)
* Heartburn
* Lack of appetite
* Morning nausea
* Muscle weakness
* Night sweats
* Palpitations
* Spasms of the stomach wall
* Constipation or infrequent bowel movements
* Weight loss, malnutrition
* Difficulty swallowing
Over the the past 2 years, she has had multiple hospital admissions due to her being malnourished and dehydrated due to being unable to eat or drink as a result of the gastro paresis. Taiy needed several feeding tubes over the past year, however r aide she kept throwing them up her old team eventually stopped replacing them.
Taiy was also diagnosed with postural orthostatic tachychardia syndrome (POTS) being caused by her EDS. Symptoms of POTS include palpitations, light-headedness, chest discomfort, shortness of breath,nausea, weakness or "heaviness" in the lower legs, blurred vision, and cognitive difficulties. One of the most disabling and prevalent symptoms in POTS is "brain fog", a term used by patients to describe the cognitive difficulties they experience
Recently Taiy has received additional diagnoses that are rare and not well own.
These include,
* atypical Nutcracker Syndrome which is a rare and often unrecognized cause of chronic pelvic pain and left back pain.
* May–Thurner syndrome (MTS), also known as the iliac vein compression syndrome, is a condition in which compression of the common venous outflow tract of the left lower extremity may cause discomfort, swelling, pain or clots (deep venous thrombosis) in the iliofemoral veins.
* Median arcuate ligament syndrome (MALS) is a condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus).
I’m addition to all these rare and debilitating illnesses, doctors also believe she may have what is called floating kidney in both her right and left kidneys.
In order to give Taiy any quality of life it’s essential that she see renowned medical doctors Professor Scholbach and Professor Sandman. They are both leading experts worldwide for these rare conditions.
Unfortunately both Professor Scholbach and Professor Sandman are based in Germany.
Professor Scholbach specialises in ultrasounds and scans for vascular compression syndromes and Professor Samdmann specialises in vascular compression surgery.
For Taiy to get the treatment she so desperately we need to get her to Germany to have surgery so she can start living free of these debilitating conditions. She has had her teenage years stolen by these conditions and the next thing we can do is offer her a pain free future.
Unfortunately, we are a single income family and two of our other children also have special needs. So we are taking the last resort of reaching out on this site in the hopes we can raise money to change our daughter’s life.
The money will be used as follows
Specialised scans $10,000
Hospital and surgery is estimated at $80,000
Airfairs per person is roughly $16,000. I will be accompanying Taiy, so that’s $32,000 (we can only fly one airline due to medical issues)
We need have accommodation in two different cities for both before the surgery, and then for a month after surgery before we will be able to fly home.
I’m addition to this there will be city transport costs, medications, medical health insurance, food and any other living expenses.
Taiy will be 18 soon, and she wants to go to university one day and study to be a specialist paediatrician so she can help other children that may have been missed with issues like hers.
She had to leave her amazing school in year 11 that she had been at since year 7 and do year 12 via distance education as she was in the hospital more than she was at school.
She has missed out on most things teenagers take for granted. She wants to get her licence and be well enough to not always be in pain so she can live as a normal teenage.
Any contribution or share would be so appreciated.
Thank you!
A story if a woman who has had the surgery Taiy needs.
Co-organizers (3)
Kelly Marie
Organizer
Alkimos, WA
Matthew Bull
Co-organizer
Candice Myers
Co-organizer