Larissa Doménica, una dulce pequeña que vive en Loja-Ecuador, a sus 9 meses de vida fue diagnosticada como portadora del Síndrome de Larón, una enfermedad huérfana que no permite el crecimiento normal de los bebés, aproximadamente 350 personas la tienen en el mundo; quizá Larissa sea una de las primeras bebés que se confirme su condición y que tenga la posibilidad de iniciar un tratamiento oportuno.

Actualmente, con un año y siete meses de edad, Larissa simplemente enamora, da vida, da luz, amor y esperanza, es una pequeña niña que encanta con su ocurrencias y su dulzura.

Sus padres Leonardo y Pamela, han hecho todo por el bienestar de la bebé, han gastado todo el dinero en consultas, tratamientos y medicamentos; pero solo hay una medicina en el mundo para éste síndrome (Mecacermina) que puede hacer que ella tenga la posibilidad de crecer y llegar a una estatura promedio de 130 cm (4'4").

Al ser una enfermedad huérfana con un número contado de casos, el acceso a su tratamiento es muy limitado y muy costoso. En el Ecuador, únicamente el Ministerio de Salud Pública es el encargado de aprovisionar la medicina, sin embargo existe muy poca probabilidad de que se la consiga; actualmente se confirmó que Larissa no va a iniciar su tratamiento a tiempo, que es antes de que cumpla los dos años.

El percance que hay para conseguir la medicina, ha conducido a sus padres a buscar alternativas para conseguirla fuera del país, aún con respuesta incierta pero con la seguridad que va a ser muy costoso.

Larissa es la razón de vivir de sus padres, son dos corazones que laten por ella y suplican por ayuda para poder conseguir la medicina y lograr que Larissa pueda llevar una vida feliz y normal.

Ayúdanos! Tu aporte permitirá cumplir este objetivo y que Larissa tenga esta oportunidad de crecer.

Hemos tenido muchos voluntarios que desean colaborar mediante transferencia bancaria en Ecuador. Dejaré los datos aquí

Leonardo Xavier Celi Paladines

Ci.: 1104456536

Cta ahorros Banco de Loja

# 2902814736

[email redacted]

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We are Larissa Doménica’s parents, we’re both 30 years old from Ecuador. We were born in the small town of Loja. Larissa has given our lives purpose and her happiness has become our main priority. Our hearts yearn for her to live a meaningful life, a life filled with beautiful and joyous moments. A life that she can live with the highest level of autonomy and most of all liberty. She is a year and seven months old, and in that small window of time she has given us a lifetime of light, love, and hope. She enchants us with her tenderness and most of all her sweet personality.

When Larissa was 9 months old, she was diagnosed with Laron Syndrome. This is a form of dwarfism wherein only about 350 people are known to be diagnosed with. Larissa is possibly one of the youngest cases to be confirmed with this disease, and therefore might have a chance to initiate treatment!

As her parents Leonardo and Pamela have been doing all we can to obtain treatment, being a medicine known as (Mecacermina). So that she can have a chance at growing to a relatively normal size and leading a normal life. However, due to Laron syndrome being a very rare type of dwarfism, there is very limited access to this medicine and subsequent treatment, and any available medicine comes at a very high cost. The Ministry of Public Health in Ecuador have been the ones in charge of supplying our needed medicine. Yet, there is a lot of instability within the organization. To the point where, they have notified us that Larissa will not be able to initiate her treatment within the needed time frame. Since the Ministry will not initiate Larissa’s treatment on time, we have no choice but to look for an opportunity to find treatment for our daughter outside of our country. So that she can have a shot at growing and hopefully grow to be 130 cm tall.

In order to give Larissa this chance, she must begin treatment as soon as she turns 2 years of age. She is fast approaching this deadline, and we still have no access to the medicine she needs in our country.

Please help us! Your help will allow us to give Larissa an opportunity to grow and most of all live a normal and fruitful life!