This is Coline's story :

From Roland and Pascale ERHEL
7 , rue de Molène
35135 Chantepie
France

Hello ! This is Roland and Pascale Erhel, and this is the story of our little girl, Coline. We are french thus, first of all, we must ask your indulgence for the broken english we are writing in. We live in Chantepie, a little town near Rennes, in the west of France. We have two daughters : Aurélie, aged 10, and Coline, aged 5. We live in a very beautiful area with the sea nearby and we could have been perfectly happy if Transverse Myelitis didn't come and turn this quiet stability upside down.

 Myelitis : we never even have heard about this disease before july 97.

July 97 : Coline is a pretty little girl aged nine months. She just begins to stand up in her playpen but she still doesn't walk. On the 17th of july, her mother picks her up from her nanny's home, Coline is very grouchy, she looks as if she has pain. The GP comes to our home and only finds that her ears are lightly red, nothing more.
When Coline woke up on the morning of the 18th of july, she had a fever (39 °C) and we noticed she was a bit "limp". The GP comes again and thinks she is weak because of the fever (he finds a double otitis plus a laryngitis). Coline sleeps all this day long, she sometimes has her eyes opened, but she doesn't cry. At the end of the afternoon we keep her out of her little bed and we discover at this time that she is completely limp, without any reaction. After a phone call to our GP, we go and take her to the pediatric emergencies at the Hospital.
She cannot move her legs, her hands, nor her arms, she only can move her head from right to left when lying on her back on the bed. In the space of a few hours, Coline has become almost totally vegetative !

From then on , the medical team performs the following procedures :

# a lumbar puncture (meningitis ?)

# an Electroencephalogram (convulsion when she was asleep ? We were concerned about poisoning from medications that she might have gotten into at her nanny's home. This hypothesis was abandoned).

# a brain scanner (normal)

# a MRI, which finally confirmed the diagnosis of Myelitis made by the neuropediatric of the medical team. It's an acute cervical myelitis in C1 - C4.

# an echography of the bladder : the bladder is full and Coline is unable to empty it ; this, again, confirms the diagnosis.

Coline stayed for 3 weeks in this vegetative state , she received different treatments :

# an IV for rehydratation

# Antibiotics (CLAFORAN, NETROMYCINE)

# Antipyretics (PRODAFFALGAN, ASPEGIC)

# Morphine (SKENAN), because Myelitis is often painful.

# A daily session of Physical Therapy (passive mobilization of the four limbs)

There is actually no real treatment for Myelitis. A medical protocol is usually used in this case to try to attenuate the inflammation of the spinal cord ; Coline received this treatment during these three first weeks of hospitalisation :

# A bolus of Corticoids (a great dose of corticoids given on a very short time - in French we say "une dose de charge", during three days)

# Immunoglobulines, one IV or perfusion, lasting two hours, over a three day period.

# Corticoids (little doses) per os (oral, by mouth) during 10 days.

On the 11th of august 97, Coline is transferred to Paris for a "super-consultation" with the french specialist of children's neurological diseases, Pr Pierre Landrieu. He gives us a great deal of information about a disease we didn't know until then, but he stayed very careful concerning the possibility of recovery for Coline, insisting upon the fact that there is an enormous individual variability in these neurological problems.

I can't describe the state we were in during this awful period : From one day to another, Coline was reduced to a vegetable state, we didn't know how it happened (perhaps a gastroenteritis she made at the end of june, they didn't succeed in finding out the virus responsible for this) and we also didn't know how she would recover. In fact, we didn't know the reason it came to be, and we didn't know where we were headed...

At the end of the third week of hospitalisation, the recovery began very progressively : support of the head, movements of arms, folding the right arm, get her right hand to her mouth ...

Coline went back home on the 14th of august. After a few weeks at home, the improvements tended to slow and then apparently stopped.

From august 97 until today we haven't stopped trying to find anyone able to help her, to help us : the best and the worst, serious and honest people, but also charlatans (in desperation, we go and see anybody pretending to be helpful for us. Love makes blind, but sorrow too...)

Coline today is a very pretty little girl aged 5, very happy to live, always smiling (which is a great help for us, her parents, her sister and relatives). Damages caused by TM are unfortunately visible and deeply disabling :

Coline cannot normally maintain her chest, she stoops and has to lean on armrests or her thighs to support her back. She wears as often as possible a surgical corset which extends from her hips to the armpits. Essential to prevent her spinal cord from any distortion, this corset limits to a certain extent the movements of her arms (when she plays, when she draws...) and turns out definitely bothersome in certain situations (when it's warm, during our holidays in Corsica, for example...)

Coline can use normally her right arm and right hand but her left hand has remained partially handicapped : in the beginning she could only use her two fingers, thumb and forefinger ; she could use the "pliers" with the thumb and the forefinger but the three others fingers remain more oftenly folded and inactive. She has yet to succeed in opening her hand, very slowly, for sease (for example, she can hold normally the handlebars of her little electric scooter with which she drives around in the neighbourhood) (I transformed it so that the accelerator could be activated by hand).

Coline can't use her legs, even if those are sometimes animated by volontary movements, mainly in the way of pushing. We have in our home a "verticalisator", that we call "le debout" (the "stand up"), a mobile device in which we install her in order to fortify her legs (to avoid demineralization and weakening of her bones). Seeing our little girl strapped up tight in her corset and attached in her "debout" is a heartbreak, but we must get her in it. She, herself, feels quite good in it because of her unusual vertical position which provides her a different perception of her own body and her environment.

To these already heavy handicaps go in addition, as if it was not enough, a whole trail of secondary problems ("secondary" but also hard to cope with). The dysfunction of her bladder which compels us to practise three urinary catheterizations per day (at her awakening, at midday and in the evening). We, of course, have learned to do ourselves this nursing act whose daily repetition for more than four years would seem unbearable for many, but it's now for us a part of our "routine". Despite these catheterizations, or maybe because of them, Coline often develops urinary infections which need to be treated. Echographies of the bladder are regularly done, as well as scintigraphy of the kidneys.

Each ORL infection ( Oto-Rhino-Laryngologique -- ear, nose and Throat problems ) brings complications because Coline hasn't got a cough effective enough to clear the phlegms. Her daily session of physical therapy is then replaced by breathing physiotherapy, which occurs several times each winter.

Coline is seeing by Dr Nicolas ( Rehab ) in Rennes . He deals with all the problems related to her handicap, especially all that concerns the corset, differents orthesis and devices aimed to avoid distortions of her spinal cord, her hips and inferior limbs. Two times a week she has a visit from Yves, her physical therapist, and one time a week we go and see Marie-Claude, a P.T. too, but specialized in children with motor problems.

Coline has been precocious as regards language, she speaks very well and a lot (she is not a girl for nothing !). Perhaps her intellectual development has come and compensates the motor insufficiency. She now goes full time to nursery-school. Rozenn, her teacher, is assisted by Yann, who's job is to exclusively look after Coline at school (These Youngs  in France, are called "auxiliaires d'intégration" ("Integration auxilary"), I don't know if this exists elsewhere...). Coline uses her wheelchair in the classroom and she has a table specially designed for her.

That was, until today, the story of Coline (which is also, of course, the story of us, her parents, and all her relatives), the poor little story of a poor little girl that had badly began with life. Sorry, we don't believe in G-d. It's certainly a pity, because if we believed, it would be, without any doubt, of some help for us, but you just can't obligate yourself to believe...

We do hope that life will be better for Coline in the future - we believe in the progress of the Science - and a great deal of our time and energy will be devoted to her. Before TM, we had no particular aim in life, now we have one, and it is a magnificent challenge ! 

Roland et Pascale Erhel  (2002)