The mother of little Antonis who returned home two days ago after undergoing revolutionary treatment for a rare degenerative disease has spoken the family’s experience in Boston and how her child, who is showing improvement by the day, has responded to the treatment.
“We already see improvement – it is visible from the muscles of his face when he smiles. It shows from the movements of his hands, which are getting bigger day by day. He is now able to hold his head up and turn around. He can hold a pencil and draw for the first time. ”
With these words and overwhelming happiness Hara Andreou, the mother of the two year old boy who has warmed hearts with his courage and engaging smile, spoke to Phileleftheros’ Despina Psillou about their experience.
“He is really brave. He didn’t stop striving for a moment. He’s a fighter and a very charismatic kid. He understands the goals he must reach and strives for them daily. He is always smiling, receptive and cooperative with everyone.”
Antonis and his parents returned to Cyprus two days ago after the most important trip of their life.
“We left Cyprus with anxiety and a lot of nervousness. We had been dreaming about this moment a long time ago. However, we did not believe that it could become a reality. For us, it was inconceivable,” Hara says.
On September 23, they departed for Boston. “The journey took 15 hours, and we had to stop in Germany, Iceland and Canada. Antonis enjoyed every landing and take-off. Immediately after our arrival, we were taken to the hospital by ambulance and started meeting the doctors and examination had began. ”
Antonis, who in October celebrated his second birthday while in Boston, suffers from Spinal Muscular Atrophy type 1.
After a marathon struggle by the family and with the support of the whole island, Antonis traveled to Boston in September for the revolutionary treatment that would give him hope for a normal life, becoming the first patient from Cyprus to receive ZOLGENSMA – the only medication existing for this disease.
The treatment was administered intravenously only once and aims at steady correction of the disease-causing gene damage.
In mid-August president Nicos Anastasiades had announced that the state would pay for the costly treatment ($2 million).
Hara says that they were really fortunate. Antonis was in good ealth and with his charm and sweetness, managed to win the hearts of the entire medical team at Boston Children’s Hospital, the head of which — Dr. Vasilis Daras originates from the Greek island of Samos.
“The following days were extremely critical. Antonis must not get sick because it could affect the outcome of his treatment. We were very careful and didn’t go anywhere. Initially, we stayed at the Hospitality House, which belongs to the Church. However, eventually, we had to find a new place to stay for the next two and a half months so we settled in an apartment, where we had created space for the child’s medical devices and physiotherapy.”
The administration of the pioneering treatment was scheduled for September 30.
“It was very comforting for us that Antonis didn’t have to be hospitalized even for a day. He was an outpatient. He didn’t even stay in when the medicine was administered to him.
“We were seeing a €2m gene cure go through his vein while watching cartoons and while a toy dog kept him a company. After an hour it was all over. Antonis stayed in the hospital for a few hours for follow-up, and the next day new specialised examinations and tests began.”
Doctors have told the family that tt will take time to see the results of the treatment
“It’s not easy to invigorate the muscles that were dormant for two years. However, his system now produces the substance needed to move the body. We have to build up his muscular strength now. The improvement, according to doctors, begins in three months and will take around two years. But we know from the child that the treatment has worked. The primary issue was the breathing, the lungs to function normally, and the rest will come.”
“Today, we have to be careful as he might fall or hit himself because he started moving, but these normal concerns are really important to us because we experience them for the first time. Small and obvious for others, to us they are huge.”
However, there are other battles to win. Antonis’ mother explained since the child must continue to be monitored by doctors, and the possibility of surgery has not been excluded. As she said, Antonis is still taking cortisone daily as he remains ‘under treatment’ for four months after the injection.
“At the same time, we are now waiting for the Ministry of Health to approve the medicine Antonis has been receiving so far, which will enhance the treatment. And we expect that the tracheostomy to be removed in the spring”, – Hara says.
In nine months Antonis will be examined by the doctors again to check the progress and to adjust his breathing device. He may also have to undergo surgeries to mend his scoliosis as well as the lower jaw.
As about their dreams and desires about their son, Hara said that first of all she wants him to become a good person, to help those in need, to contribute as a responsible member of society. He had a hard time and that’s why I believe in this,” she stated.
Hara said that she hopes cures for all diseases will be soon found. There were other children in Cyprus like Antonis, once every two years a child with the rare disease is born in Cyprus, and many of them died – in 2012, in 2014…
“We have to be ready for the next one and to face it properly because there are future and hope,” she concluded.