Woman wishes for ventilator for daughter with brain disorder

Mable Zane de Leon

MANILA, Philippines — Windy de Leon thought she had lost her youngest daughter, Mable Zane, at birth in 2017 when the baby did not cry.

Doctors intubated Mable who was found to be suffering from sepsis or a blood infection. She was also diagnosed with hypoxic-ischemic encephalopathy (brain dysfunction caused by lack of oxygen) and microcephaly (smaller than usual head due to underdeveloped brain), which doctors said would “slow her development.”

Intubation, however, led to a scraped throat that resulted in laryngomalacia or softening of the larynx’s tissues, prompting doctors to do a tracheostomy (putting a tube in neck to ease breathing) and gastrostomy (inserting a tube in stomach for feeding).

Mable has been dependent on a mechanical ventilator to help her breathe since 2018. Without the machine, she forgets to breathe especially when asleep, which results in seizures. An EEG test led to the diagnosis that she has epilepsy secondary to cerebral palsy.

With medication, her seizures have gone down to 10 from 20 a day and lasting only seconds instead of minutes.

“Every time she has a seizure, I wish I could take her place,” De Leon said.

On Aug. 6, 2018, Mable suffered cardiac arrest twice and was declared dead for 25 minutes. A doctor revived her and for De Leon, that was the day God proved that miracles were possible.

“The Lord has already lent her to us for four years. It still depends on Him, that every day we wake up and she’s there. We are lucky and we have become stronger as spouses,” she said.

Her husband, who works in a soap factory, is lucky if he earns P7,000 a month. To supplement his income, De Leon sells clothes, bags and other items through their Facebook page Warrior Mable Zane where they also call for donations.

The couple spends at least P6,000 monthly for Mable’s medicines and P20,000 to P30,000 every three months to change her feeding and breathing tubes. Her medications include phenobarbital (antiseizure); trileptal and topiramate/topvex; baclofen/lioresal (muscle relaxer and antispasmodic agent); and keppra/levetiracetam (antiepileptic) that costs P2,570 per bottle.

“I wish for my daughter to have her own ventilator but it is expensive,” De Leon said.

The ventilator Mable is using was lent by a Good Samaritan. A brand-new ventilator costs between P350,000 and almost P1 million. A used one goes for P140,000.

Those who want to help Mable may deposit their donations in her mother’s LandBank account no. 1987-2659-37. De Leon can be reached at 0926-7232530.