Loïc

Loïc has just undergone a day of surgery because of his illness (Morquio syndrome). 

January 31, 2011: Our little man left with the doctors and nurses this morning. He was the bravest of us all. There wasn’t an ounce of fear in him. Loïc will undergo a wide range of surgical procedures, as anesthesia is very delicate for him. In the nose and ears, he will have an adenoidectomy, cauterization and cleaning of the tubes in the ears. The orthopedist and neurosurgeon will take over, decompressing the spinal cord and fusing her spine to stabilize the whole thing. Surgery is expected to take around 9 hours.

The hardest part of the day: the waiting, the interminable waiting.

At around 4 o’clock, the neurosurgeon came to give us good news about the decompression of the spinal cord in Loïc’s neck. Everything worked out just as he’d hoped. We’ve just had more news from the orthopedist who took over the bone fusion that connects the skull to the second vertebra to stabilize his neck.

February¹: I cried with joy when I asked the nurse if Loïc had moved his hands and feet! You guessed it… everything works perfectly!

February 4: Loïc received his corset last night. He will have to wear it 24 hours a day, except when bathing. This detail did not fall on deaf ears. After spending a whole night stuck in his shell, he exclaimed, “Mommy, I want a nice bath!!!” Ha! Ha! Ha! We also took a stroller ride through the hospital corridors. This is one of Loïc’s first challenges. At the end of the week, he will embark on his second challenge, which we hope will work out! He is very persevering and courageous.

February 8: Loïc is very proud to show you his first dragon drawing! He realized last night that he will have to wear his corset even after he gets out of the hospital, for 3 months, day and night… he was a little sad…

February 10: we’re back home, reunited with Dad and Loïc’s brother and sister.

Morquio disease is an inherited, progressive disorder belonging to a class of diseases known as “lysosomal overload”. Glycoaminoglycans or mucopolysaccharides (large sugar molecules), which are normally eliminated or recycled by the body, accumulate in the body’s cells. Symptoms appear during childhood as a result of this accumulation, and present themselves as abnormal bone development, generally resulting in significant physical handicap and short stature, without intellectual deficits. Other body systems may also be affected (cardiac, pulmonary, auditory, etc.). Morquio disease affects boys and girls equally. Approximately one person in 30,000 is affected, born to parents who do not have the disease (they carry the defective gene, but are not affected). Two carrier parents have a 25% probability of having an affected child in each pregnancy. 

Find out more about Morquio disease >>>>