Help Luke fight for SSPE

I am Angel Villareal, Luke's step mother as i am the one who took care of him. We lived in Metro Manila.

We are raising this funds to buy his daily needs and to do his laboratory test.

We need this fund weekly, since his medicines are good for 1 week only.

I am raising funds for my son, Herzen Luke, a 8-year-old child who recently diagnosed with SSPE (Subacute Sclerosis Panencephalitis). A very rare, but fatal disease of central nervous system that result from a measles virus infection acquired earlier in life. The disease progressed rapidly to last stage (stage 4), thus, he developed pneumonia which makes him difficult to breath and was hooked to a ventilator, medicated with high dosage and extremely expensive antibiotics q8, placed on Nasogastric Tube due to inability to swallow.

After days of supportive medication, doctors suggested to undergo Tracheostomy and Percutaneous Endoscopic Gastrostomy to reduce further risk of infection. The disease requires a long term care. We are asking for financial help to pay off his medical bills which is over 3 million, as well as to support him to his recovery.

Last year 2020 me and my partner decided to get his son, which is Luke. Like what i said i am not Luke's biological mother but i was the one who took care of him.

Last year, he is so thin and looks like he don't have the proper care or food to eat, cause he was only 16kls that time.



So i decided to do his monthly check up, the doctor is so happy to see him getting stronger each and everyday.



I gave him nutritious food so he can be more stronger and still having his monthly check up.



So December 2020 i noticed several times while he was standing, he wasn't able to control his self. And this year January 5, he always stumbles and falls, the head always hits when it falls. This makes us worried. So i consult to a 3 doctors. And the day he had his check up, he had his first SEIZURE for less than 3 minutes. And we decided to admit him in the hospital. He was admitted in a private hospital because it was emergency and the vital signs needs to check ASAP. Due to Covid, public hospitals doesn't allow patient rushed in the Emergency Room, you need to bring latest swab test before they admit the patient. That's why we admit him in the private hospital and do all the laboratory in the premises. He was admitted for 5 days, the doctor says it was "Epilepsy" so she gave as prescription medication and this should be taken as his maintenance.

February, March, April his having jerks and i also noticed that every night he can't sleep well. By the month of April, he doesn't want to eat as well. Im getting worried. We brought him to the hospital again, while we were on our way he is already fainting. Again, this May he was admitted again. 3days in a private room, while feeding him around 7:06pm he had a seizure again, i called the nurses and they monitor his vital signs, i am so nervous and worried that time cause he had his seizure for 48mins almost 1hr. The doctors told me, he needs to be transferred in the ICU ( Intensive Care Unit ).



All of us, when we heard ICU not good to listen to. But i had no choice but let doctor do their job, as we want to know where is the SEIZURES came from. After 20mins in the ICU, the doctors told us that he has a Pneumonia and he needs to be intubated because his lungs aren't good. And still we had no choice but to said yes. On the next day, his Pediatric Neurologist told me he needs to undergo "CSF ( Cerebrospinal fluid ) This is the only way for us to know where are those SEIZURES and JERKS came from. After 4days of waiting, the doctor called me as she wanted to talked to me first, sadly the result is "POSITIVE". Our baby Herzen Luke, is positive in SSPE ( SUBACUTE SCLEROSING PANENCEPHALITIS ) this is a measles infection, that spreads also on his brain.

To be honest, we've been trying to reached out to Luke's biological mother to asked if he had his measles vaccine when he was still a baby. But sadly, Luke's baby book clearly seen by the doctor that HE HAS NO VACCINE, that's why he is positive in the result of SSPE.

May 19, Luke needs to undergo operation for his TRACHEOSTOMY. This breaks our heart, to see him lying down all there in bed. Luke, was in the ICU for 3 months.



After a week he also undergo another operation which is his PEG insertion.

A percutaneous endoscopic gastrostomy (PEG) is a surgery to place a feeding tube. Feeding tubes, or PEG tubes, allow you to receive nutrition through your stomach. You may need a PEG tube if you have difficulty swallowing or can't get all the nutrition you need by mouth.

As he stays longer in the ICU, our bill piles up too. As a parents we wanted him to survive and do all the possible things for him.



SSPE ( SUBACUTE SCLEROSING PANENCEPHALITIS ) is a progressive, disabling, and deadly brain disorder related to measles (rubeola) infection. The disease develops many years after the measles infection.

We are asking the doctor's, how can SSPE treated.

* No cure is available for SSPE. However, the doctor can prescribe some antiviral drugs that may slow the progression of his condition. They may also prescribe anticonvulsant drugs to control seizures. It is a progressive and usually fatal brain disorder, is a rare complication of measles that appears months or years later and causes mental deterioration, muscle jerks, and seizures.

Subacute sclerosing panencephalitis is caused by the measles virus. The first symptoms are usually poor school performance, forgetfulness, temper outbursts, distractibility, sleeplessness, and hallucinations.The diagnosis is based on symptoms. This disorder is usually fatal.

There is no treatment for subacute sclerosing panencephalitis.

SSPE results from a long-term brain infection with the measles virus. The virus sometimes enters the brain during a measles infection. Measles virus may cause immediate symptoms of brain infection (encephalitis), or the virus may remain in the brain for a long time without causing problems.

Subacute sclerosing panencephalitis occurs because the measles virus reactivates. Males are affected more often than females. The risk of developing subacute sclerosing panencephalitis is highest in people who contract measles before they are 2 years of age. Subacute sclerosing panencephalitis usually begins in children or young adults, usually before age 20.

** Symptoms of SSPE

The first symptoms of subacute sclerosing panencephalitis may be poor performance in schoolwork, forgetfulness, temper outbursts, distractibility, sleeplessness, and hallucinations. Sudden muscular jerks of the arms, head, or body may occur. Eventually, seizures may occur, together with abnormal uncontrollable muscle movements. Intellect and speech continue to deteriorate. Later, the muscles become increasingly rigid, and swallowing may become difficult. The swallowing difficulty sometimes causes people to choke on their saliva, resulting in pneumonia. People may become blind. In the final phases, the body temperature may rise, and the blood pressure and pulse become abnormal.

** Diagnosis of SSPE

1.Tests on cerebrospinal fluid or blood

2. Imaging tests

A doctor suspects subacute sclerosing panencephalitis in young people who have mental deterioration and muscle jerks and a previous history of measles. The diagnosis may be confirmed by examination of cerebrospinal fluid, a blood test that reveals high levels of antibody to the measles virus, by an abnormal electroencephalogram (EEG), and by magnetic resonance imaging (MRI) or computed tomography (CT) that shows brain abnormalities.

A biopsy of the brain may need to be done if the tests cannot reveal a cause.

**Prognosis for SSPE

Subacute sclerosing panencephalitis is nearly always fatal within 1 to 3 years. Although the cause of death is usually pneumonia, the pneumonia results from the extreme weakness and abnormal muscle control caused by the disease.

This is hardest part of us, that there is no cure for SSPE. We only believed in our Lord Jesus Christ that he is the only one who can give the best medicine for our Luke. My only wish and prayer is always for him, i want him to be all well . This will takes time for his fast recovery.

https://www.facebook.com/110213807936079/posts/173...