Tuberous Sclerosis Complex - Lam Chuk-yiu

You make me cry make me smile
Make me feel the love is true
Thank you for your care and unconditional love
Through many long and arduous years, you always prioritized my joys and sorrows
Fearing I wouldn't receive the most intimate protection, Oh I love you
(Excerpt from "The Only One in the World")

I learn slower than others…
I always attract strange looks…
I have tumors all over my brain, my organs could fail at any moment, but I can't express it…
Yet, I can reveal my little-known inner world through my paintings and give back to society with my talent. Do you feel it?
I am Lam Chuk Yiu (Yiu Yiu), who suffers from Tuberous Sclerosis Complex but is regarded as a gift by my mother.

"Oh I love you…" 19-year-old Yiu Yiu is a "mic hog," who loves to hold "personal concerts" at home, humming "The Only One in the World" with her mother Rebecca. "From my birth, from the beginning until eternity never ceases…" The lyrics seem to tell their story.

Yiu Yiu not only suffers from the rare Tuberous Sclerosis Complex but also has autistic tendencies, OCD, and mild to moderate intellectual disability. When she was about 5 months old, she suddenly had a seizure one day. Her mother didn't think much of it at first. Unexpectedly, Yiu Yiu had another seizure at the same time the next day. "I realized something wasn't right, so I immediately took her to a pediatrician."

What followed were endless examinations, from the clinic to Queen Mary Hospital. For more than half a year, the cause of the illness could not be found, but her condition worsened. "I was so lost and helpless! We were seeing the most authoritative and best pediatricians in Hong Kong, but we still didn't know what was wrong. The anti-seizure medication didn't help her. The seizures increased from once a day, to twice a day, to three times a day; but nothing helped!"

Brain Full of Tumors Like Watermelon Seeds

After more than half a year, the hospital finally diagnosed Yiu Yiu with Tuberous Sclerosis Complex. "I clearly remember the professor showing the MRI scan. It looked like a watermelon, with white spots of tumors all over her head. At that time, the professor said there wasn't much that could be done."

"I was so sad and cried terribly. I asked the professor, 'Why can't surgery be done?' He said with tumors all over her head, how could it be done?! Hong Kong doesn't have this technology. At that time, I felt like it was the end of the world."

Brain Surgery in the US to Remove Tumors

"I don't believe that Yiu Yiu is the only one in the world with Tuberous Sclerosis Complex!" With her unwavering belief, Rebecca persistently asked the professor to recommend foreign doctors, and even got scolded: "He was very fierce and said I was annoying! He scolded me until I was dumbfounded, but the professor was our only hope, who else could I ask?!" Soon after, the professor recommended an American doctor, and she immediately took Yiu Yiu, who was only 20 months old at the time, to the US for surgery.

"Fortunately, the surgery was very successful, and the tumor that caused her severe seizures was removed." Although Yiu Yiu still has many tumors in her brain and occasionally has seizures, it's no longer like the peak period of 160 seizures a month, and medication can still control her condition.

Scratches All Over, Child Abuse Suspicions

What troubled Rebecca, besides the tumors that could erupt in Yiu Yiu's body at any time, were her self-destructive behaviors influenced by obsessive-compulsive disorder. "She scratched her hands, legs, and body all over (scars). One time, I took her swimming, and the pool attendant asked Yiu Yiu, 'Little girl, why do you have so many scars on your body?' It was clear she suspected me of abuse!"

"When she scratched her face badly, she would pretend to need a plaster, she thought it was pretty and happy. So, for a while, when she went out, she looked like 'Ah Sau' (a character often covered in plasters), with plasters all over her face." Rebecca admitted her helplessness but could only accept it, believing it was part of her daughter's growth process; fortunately, after her persistent advice and guidance, Yiu Yiu has reduced such behaviors in recent years.

Unleashing Talent, Giving Back to Society

Afflicted by illness, her beloved daughter could not learn normally like other children. Rebecca sought other methods of nurturing her. "Reading ten thousand books is not as good as traveling ten thousand miles. When I'm free, I take her out or on trips, hoping she learns through personal experience." Rebecca also arranged extracurricular activities such as swimming, piano, painting, and choir, hoping to increase Yiu Yiu's possibilities in life. Unexpectedly, Yiu Yiu's "little universe" was suddenly ignited.

"Some things are meant to be!" Rebecca was both happy and surprised. "Painting was originally meant to train her to sit still for an hour, but thanks to the teacher's many years of perseverance, dedication, and patience, she can now produce such beautiful paintings." Yiu Yiu's confidence "has all returned." "Now, even if she's with strangers, she'll tell them Yiu Yiu is very good at painting. Even if she has an intellectual disability, she has her own little world. I'm so happy that Yiu Yiu has this talent to give back to society, I'm really happy!"

Choosing Acceptance, Dropping the Burden

Recalling the early stages of Yiu Yiu's illness, Rebecca admitted neglecting her eldest daughter. "She used to ask the nuns to pray for her. She was so scared about her sister's unknown illness and afraid of others knowing her sister was sick." It wasn't until the school informed her that she suddenly realized. "I told my eldest daughter, if you don't accept that your sister is a sick child, how can you expect others to accept her?"

Rebecca believes that only through "acceptance" can one let go of psychological burdens. "Perhaps I'm thick-skinned enough, my husband and I never thought of hiding Yiu Yiu. If you're afraid of others knowing, how can people help you? This is something in life; if you view it as a burden, life will be very hard. Only by getting rid of this psychological burden can you live happily!"

Learning Patience, Understanding Tolerance

Yiu Yiu's mild to moderate intellectual disability brought pressure to "tiger mom" Rebecca. "I want my children to be neat and tidy, and I'm impatient, but it took me a year just to teach her 'corn.' She learns like a funnel; no matter how much you pour in, you don't know if she's learned 1% to 5%." She admitted to feeling discouraged and even having outbursts of anger, but later she realized, "She trained my patience and tolerance, and taught me to look at things from different perspectives."

"I learned to appreciate her. Although she isn't good at learning, she sings better than me and paints better than me. So, my elder daughter also complains about me, feeling that I have double standards, why am I so strict with her but so tolerant with her sister?" Rebecca frankly admits that Yiu Yiu is not a defect in her life; on the contrary, she is a gift from heaven, a training in her life, compensating for her character flaws.

High Medication Costs, Over HK$20,000 Per Month

Overseas research has found that "mTOR inhibitors" can shrink facial tumors in patients with Tuberous Sclerosis Complex and effectively improve seizures and cognitive abilities; however, this drug is not yet included in Hong Kong's drug list, and the monthly cost of medication is about HK$20,000, undoubtedly adding pressure to affected families.

"I really hope the government will include (mTOR inhibitors) in the drug list as soon as possible. Otherwise, the tumors are like a ticking time bomb; you never know which organ they'll appear in, and they'll grow bigger and bigger, leading to organ failure." What Rebecca describes is exactly what Yiu Yiu will face. "Yiu Yiu is almost 20 years old. With this disease, when she reaches her twenties, the tumors will proliferate. Then we'll see if she's lucky."

Too Many Restrictions, Absurd Policy

Although the Hospital Authority expects to expand the scope of drug treatment to renal tumors this year, Rebecca admitted there are too many restrictions. "The renal tumor must reach 3cm before the drug can be prescribed, and it still needs to be reviewed. When the patient was a few years old, they might only have had tumors in their head, not their kidneys, so it would be impossible to get a prescription. This policy of the Hong Kong government is quite absurd, it contradicts the idea of 'treating illnesses early'."

Facing the dilemma, Rebecca can only continue to organize various activities to gain public recognition and raise funds for fellow patients, hoping the government feels the pressure and adjusts the scope of drug treatment as soon as possible.

"Yiu Yiu usually loves to say, 'Mommy, I love you very much.' If the medicine can help her, I hope she can clearly express her wishes!" Such a humble request... You too can contribute to patients with Tuberous Sclerosis Complex!

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Eddie: Help as Much as You Can

Yiu Yiu suffers from a serious illness, but her painting skills are excellent. Her artworks have not only been printed on red packets, but she also held a solo art exhibition earlier this year. The driving force behind these activities is former EO2 member Eddie Pang Wai-on.

The Tuberous Sclerosis Complex Association and Winstons Coffee jointly organized the "Star Dream Nursery Rhyme Project," and invited Eddie to be their ambassador. Eddie frankly admitted that Yiu Yiu's paintings left a deep impression on him. "You can see her expressing herself through her paintings. Sometimes she's very happy, and the flowers and plants are very colorful; sometimes she wants to talk about her family, so she draws her mom and dad. When I look at them with my heart, I am moved by her paintings, it's my first time experiencing that."

Eddie believes helping others is a duty. "Help as much as you can." He hopes to organize more events for the Tuberous Sclerosis Complex Association to raise awareness of this rare disease. "More understanding, more care, more government funding. Just a little more of everything is enough. I hope it spreads from person to person."