05 | Our Caregiver
Tara Sam
About Tara
Tara is the mother of Kyle and Cyrus, who are both diagnosed with atypical haemolytic uremic syndrome (aHUS). Diagnosed when they were babies, the disease causes blood clots to form in various vessels of the body, thus it can cause occlusions and affect the functions of any organs receiving blood from the occluded vessels, primarily the kidneys. Currently, Kyle, Tara’s second son, is suffering from end-stage kidney failure as a result of the haemolytic uremic syndrome (aHUS) and requires a kidney transplant at the mere age of 9.
Back To Square One
Akin to many parents-to-be, Tara was overjoyed when she discovered she was going to be a mother. She recalls reading myriad books on parenting in the hopes of providing her children with best care as possible, only to have all her expectations of parenting fly out the window when her child was diagnosed with a rare disease. Initially, Tara struggled to accept the life-changing news of her children’s condition. She recalls, “It all happened really quickly, I didn’t have time to react apart from crying. I hid in my blanket and I kept hoping that everything was just a bad dream.”
Tara explains the struggles of caring for children with a rare disease, “There are no instructions – you have to learn yourself, and it’s not easy.” Tara reveals the drastic changes in her and her husband’s lives that had to be made in order to accommodate the needs of their children; she has learnt how to operate a dialysis machine and has to be extra wary of personal hygiene to protect her immunocompromised children.
About Atypical hemolytic uremic syndrome (aHUS)
Cause
Formation of blood clots in vessels and in the kidneys
Inheritance
Most cases of aHUS are genetic; however, some may be acquired due to autoantibodies, whilst others are idiopathic.
Prevalence
Affects 2 individuals per 1 million.
Symptoms
Disease that causes blood clots to form in various vessels of the body, primarily in the kidneys; most individuals will develop hemolytic anemia, thrombocytopenia, and acute kidney failure
Effect
Patient suffer from kidney damage, and may need dialysis
Treatment
There are only two drugs, eculizumab and ravulizumab-cwvz, which are used to treat aHUS, kidney transplants may also be needed
A Mother’s Dedication
Tara experienced many roadblocks when trying to obtain more information on her children’s disease. There was limited information on the nature of the disease itself, and even less for guidance on where to find counsel – but Tara did not give up. After discovering that Soloris, a drug that could be used to treat aHUS, was not registered in Hong Kong, Tara wrote countless letters, attended public hearings, meetings and media conferences to advocate for the drug’s registration in Hong Kong.
Hopes For The Future
For Tara, seeing her children happy and self-sufficient is enough. Tara explains that her child hates himself for always being ill and having to be in the hospital, and wishes that the public can be more understanding towards people with rare diseases. Tara hopes that in the future, the Hong Kong government will pay more attention to the rare disease community and allocate more resources for information provision so that rare disease patients and their caretakers know where they can find help. She advises any new parents who may be in a similar situation to stay determined, “Don’t think it’s the end of the world. Technology is advancing daily. Try to maintain a positive outlook.”
“It all happened really quickly, I didn’t have time to react apart from crying. There are no instructions - you have to learn yourself, and it's not easy.”
“When I found out my child was diagnosed with a rare disease, all my expectations and goals went down the drain.”