Beyond Achondroplasia

Growing together with Clara

June 5, 2018
by inesp.alves
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A documentary on the lengthening process

The documentary  “The Lucas´s Journey“, by the film director Juan Enis, was produced by the mother of Lucas in 2015 and tells about the lengthening process of a boy with achondroplasia with 15 years-old, that had a total height of … Continue reading

May 8, 2015
by inesp.alves
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Like a Phoenix – living the diagnostic

This was writing a long time ago. This is a short story of the day we, parents, received Clara´s achondroplasia diagnostic. A month after Clara was born, we received an email from her geneticist to schedule an appointment. During 25 days … Continue reading

April 6, 2015
by inesp.alves
3 Comments

Gratitude and acknowledgement

In September 2011, when Clara was 1 year-old, she joined the kindergarten Colégio Fundação Alentejo. Those days were a huge trial for us and for the kindergarten professionals. We wondered if us and them were prepared for the challenge. At … Continue reading

March 25, 2015
by inesp.alves
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One day of Lucas

Lucas is a 12 years old spanish boy who is crossing the lengthening process. This is a short film about one of his days. He is brave. He makes others feel braver… No need of translation.   Some words from … Continue reading

March 21, 2015
by inesp.alves
1 Comment

Waiting pays off

Since September we lived with a new short-term goal: solve the hematoma problem. It have been quite strange months, almost like living in a limbo, trying to do our best to prevent new falls and head bumps. It was hard. … Continue reading

March 1, 2015
by inesp.alves
2 Comments

Surgical treatment for cervicomedullary compression among infants with achondroplasia

Dr. Shimony’s team published on the 17th of February 2015 in the Childs Nerv. Syst. journal, an article about respiratory failure being responsible for most deaths among children with achondroplasia and that it is often related to cervicomedullary compression (CMC). … Continue reading

December 11, 2014
by inesp.alves
2 Comments

10 days after

Ten days after a forced rest in the hospital, Clara is back home. After two CT scans, with 12 days interval between both, while in a “cage rest”, Clara was discharged from the hospital, but with restrictions. The neurosurgeons team decided that … Continue reading

December 5, 2014
by inesp.alves
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Time for decisions

On the 1st December Clara was hospitalized. Although she seems to be very well, her neurosurgeon plan is that Clara stays at the hospital for a rest period of 10 days and to be close monitorized to evaluate the hematoma … Continue reading

November 25, 2014
by inesp.alves
3 Comments

Far from the tree

I’ve been reading this amazing book for a while now. It´s dense, but clear. An excelent book by Andrew Solomon. And it open ideas wider than I could imagine. It as become a moment for pause in my days. Now, … Continue reading

November 25, 2014
by inesp.alves
1 Comment

Day dreaming by Joan Pahisa

Joan is an amazing young man. He has a great smile, always inspiring others, very well-educated and with a genial energy for sports. He is totally engaging. I meet him last October during the International Congress around achondroplasia and other skeletal … Continue reading

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