Beyond Achondroplasia

Growing together with Clara

The long way up

| 1 Comment

Rarely I´ve mentioned here the hard and slow road of limb lenghtening.

My first research on achondroplasia was at the day we received the genetic report confirming Clara had achondroplasia. Some moments get engraved in our memories in the hardest way.

On that day, I stood still for moments, in front of this computed, petrified with the imagens of so many children with lengthening devices. Many children didn´t have any other option or hope for a treatment, as it exists now, with BMN-111 in a clinical trial.

But it´s still a reality and many young adults and children have undergone and still are going through this process.

Today I saw the work of a spanish phografer, shared by Alpe foundation, Lourdes Segade.

The long way up

She says:

“…This is a story about human beings, about their suffer, their strength, resilience, acceptance, joy, adaptation; a story about frustration, about being parents, about childhood and about all the emotions and key moments that are part of this tough process. This selection of images ONLY shows moments of these children and their families while in hospital or at the doctor’s office. For most of the people, growing up is a matter of time.

The greatest change happens during adolescence, when changes in both body and mind become a pain in the ass for kids and for their parents.

For children with Achondroplasia ‘growing up’ is, over all, something literal if they decide to undergo multiple surgical procedures that add centimeters to their height, given that Achondroplasia is the most common dwarfism and the average height of an adult is 131 centimeters.

For them is it worth it to spend part of childhood and the teenage sitting on a wheel chair because the result is a much better quality of life…”

 

These photos are intense, deep and express the strongest emotions. But these are just photos. For many children and parents this photos are the hardest reality. And i just can keep hope that in some years no children with achondroplasia goes through this process.

 

 

 

One Comment

  1. Vivemos os mesmos conflitos que vocês, também temos um filho hoje com 1 ano e 2 meses, Enzo, nossa razão de viver, e enquanto aguardamos os resultados e a liberação do BMN111, temos no alongamento osseo uma saída longa e dolorosa, mas uma saida, por isso é que quando me deparei com os estudos da Biomarim fiquei cheia de esperança, pois seria a saída sem ter que lançar mão da cirurgia, mas enquanto as coisas não se definem vamos caminhando com fé e esperança que de alguma forma tudo será resolvido.

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