The story of Carolina

Carolina was born on April 27 2016, with a normal weight of 3,800 grams, at 39 weeks, having a favorable postpartum evolution. At just three months, parents felt something was wrong with their princess and investigated her at neurology, cardiology and also genetic testing. The physiotherapy sessions started, and all the tests showed hypotonia.

At the age of 8 months, Carolina received the result of genetic testing, and the diagnosis of Spinal Muscular Atrophy Type 1 (Werdnig-Hoffman) was confirmed. Since then, a fierce struggle has begun to stop the disease, to find answers and solutions. This rare genetic disease is cause no. 1 at infantile death, most affected children die until the age of 18 months. The motor neurons in the spinal cord deteriorate and the muscles are atrophied, affecting all vital functions.

Carolina can not support her head, her muscles are hypotonic, she has swallowing discomfort and her cough is ineffective. Muscle affectation results in deformations of the skeleton, such as sternum clogging, scoliosis and kyphoscoliosis. The intellect is not affected, she is a cheerful, loving child, she says "mama", mimics animal sounds and loves her big brother, Victor.

Although she went through two severe pneumonia, has lost much weight (she has 7 kg at 1 year and 3 months), Carolina struggles to live and teaches us to be strong, do not give up, to believe that one day she will be fine. To support her efforts, Carolina needs the following medical devices:

• Portable surgical vacuum for secretions

• Pulse oximeter

• Cough Assist Device

• Vibrating vest for detachment of secretions from the lungs

• Bipap device for non-invasive breathing

• Supplements and hyper caloric food to help hergain weight

In 2016, in the US, the first treatment for this disease, called Spinraza was approved. With the help of family, friends, acquaintances, we managed to take Carolina to France at the HospitauxUniversitaires Paris Armand Trousseau, a hospital authorized to use this medicine.

She received 4 injections, needing to receive an intrathecal injection every 4 months for the rest of her life. The cost of a consultation before each injection is 564 euros, one day hospitalization costs 1390 euros, but this can be extended depending on the child's drug reaction. Depending on the date of departure, parents were able to find airplane tickets between 300-1000 euros and the accommodation cost 165 euros for a minimum of 3 nights.

Since Spinraza was approved by the French Insurance House, they were transferred to Belgium for the next injection, on 25.08.2017 being scheduled for consultation, and on September 1, 2017 for the intrathecal injection.

In a year,the sum of 30,000 euro must be beared to ensure Carolina’sdisplacements to treatment with everything involving them, medical devices, therapy sessions and appointments with specialized doctors, medical equipment such as orthotics, wheelchairs, not taking into account unfortunate events such as hospitalizations with pneumonia or other conditions.

With God's help, her progress is slow, but it gives us hope and confidence that she will be near us to love her and to cherish her, and her brother will have near him the sister that he loves so much. Please help Carolina to continue her treatment, to have a chance at childhood, at life.

From the bottom of my heart, thank you to anyone who donates or shares.