Isabella with her mom in hospital

Hello, my name is Johana, mom of Lia Isabella Mantilla and today I want to share our story with you.

Isabella was born on 07/05/2021, my pregnancy was very normal and calm, she was born at 39.5 weeks.

It all started fifteen days after her birth when she began to make strange movements in her body, folding her hands and feet in the shape of a knife and averting her eyes. For this reason, she was treated in the emergency room and after an electrocardiogram they discovered that Isa has infantile spasms, for people who do not know infantile spasms is a very rare type of devastatingly cruel epilepsy. She was admitted immediately as it is a drug resistant epilepsy and they had to start investigating by doing several tests to determine where the disease came from and thus be able to give the best treatment.

After an MRI they discovered that Isabella has a brain malformation which gave a neurological diagnosis of Epileptic Encephalopathy associating neurodevelopmental delay and Ohtahara syndrome. On her worst day, Isabella had more than 200 seizures a day.

With several days in the clinic and after a medical meeting, the doctors decided that the best thing for the girl was to operate on her immediately, doing epilepsy brain surgery and thus be able to remove the epileptogenic focus and be able to reduce or possibly freedom from seizures and be able to improve her condition. quality of life, since the life prognosis for Isabella was not favorable at all. At two months old on 09/06/2021 I handed my daughter over to a pediatric neurosurgery team in hopes of reducing her seizures. Sadly, Isabella failed the surgery and also the possibilities of freedom from seizures.

Isabella prepared for surgery on her brain

After the postoperative period, we realized that the seizures returned with more intensity. Isabella sat up at eleven months and crawled at two years old and has been making progress due to the therapies she has had since she was fifteen days old. My daughter has clung to life and every day we try harder to give her better quality of life and to be as independent as possible.

She has an 85% disability, she does not speak, she does not walk yet and the seizures continue every day. Isa’s diagnosis has no cure and due to the main diagnosis, other medical problems have been added such as They are hypotonia, microcephaly, autism, hyperopia and delay in global neurodevelopment and language delay.

Today I tell our story in order to be a testimony of life and also demonstrate that faith moves mountains. I also thank the people who have joined in in some way. to this beautiful cause also to make the invisible visible and to be able to reach many and raise awareness in order to be able to have more funds for more treatments for a cure because it is not just seizures, it is much more.

Today I want to ask for your support in order to be able to afford alternative and intensive therapies.

She was immensely grateful to the kind-hearted people who want to help us by sharing this. It will help me reach the right people and be able to find better treatments and thus improve my quality of life. Later I will tell you more about Lía Isabella. Thank you very much. mom who fights every day and is willing to do whatever it takes to see my daughter smile. ????

Isabella sitting on a hospital bed smiling