Xavier Kent-Scutari comes into the world on a beautiful summer’s day, at 17h15 on Tuesday 24th September 2002, at the  St Michel Clinic (Etterbeek-Brussels). His father, Nicholas, assists with the delivery (41st week) which is difficult, both for Xavier and his mother Joëlle. At home, waiting for the good news, his maternal grandmother and his uncle Frédéric are impatiently pacing around the house.   When Xavier finally decides to make his appearance, he is the most beautiful baby ever to be born. What a joy! He has magnificent blue eyes and his mother’s light chestnut colored hair. He looks a lot like his father, and afccording to his grandmother, has "the hands of a pianist". He weighs 3kg 195, measures 50.50 cm and has a cranial perimeter of 35 cm. His Apgar test is only 5/10 after the first minute and 8/10 after 5 minutes, but no further exams are carried out at this time.   Because Xavier ingested meconium whilst still in the womb, he refuses to breast feed for the first two days.

	When Xavier and his mum leave the maternity ward (2kg 940) he hasn’t regained his birth weight. It will take him almost a month to do so, despite being breast feed (+/- seven months). Soon after, Xavier suffers from gastroesophageal reflux. His paediatrician, Doctor Soumoy, prescribes Gaviscon, to be taken after breast feeding. As there is very little improvement, she soon after prescribes a PH regulator (Regla PH) to be taken between meals.

	At two months, Xavier is hospitalised for the first time at the St Elisabeth Clinic (Uccle-Brussels). He undergoes a polysomnography (sleep study),  because, ever since he was born, Xavier wheezes, mainly during the night, and his mum is worried ( .....about cot death).

	Around the age of three months, due to a plagiocephaly on the left side of his head which has not noticably corrected, and to the cramps he's suffering from, he undergoes a course of ten osteopathy sessions, which improve things somewhat. At the same time his paediatrician asks for an ultrasound scan of the cardia : There's no evidence of gastroesophageal reflux but the exam indicates a hypotonia of the left pyelocalicielle cavities. The blood tests, X-rays and ultrasound scan of the urinary system are all normal.   Despite his digestive problems and his respiratory encumberment, Xavier is progressing well, he weighs 4kg 900 and is now 63.5 cm with a cranial perimeter of 39.5 cm.   Xavier is a baby full of life and smiles, suprisingly supple. He is fascinated by his feet and readily tries to get them up and into his mouth. Very quickly he's experimenting with his vocal chords and making his first baby "ohs" and "ars". he loves water and has taken to it like a little duck, bathtime is a real treat and a moment of wonder.

	At four months old Xavier starts going to the creche 4 times a week. He eats his first vegetable panade and is starting to bring his toys up to his mouth. After going through several colds, Xavier falls ill with his first nasopharyngitis and the start of an ear infection (antibiotics prescribed: Clamoxyl then Ceclor). Despite this he seems just as happy and still astonishingly supple.   Xavier doesn't cease to amaze us with his dynamism, his activeness and his abundant energy. He starts talking to himself in front of mirrors and trys to grab hold of his musical carousel. Under his gymkana he grabs and moves the rings and turns the balls ; this fascination for all things that turn or roll will never leave him.

	Five months old and Xavier has his first fruit panade. His first tooth starts poking through but his weight is still under the average and he still can't hold his own head up.   His pediatrician notes a hypotonia and asks for an ultra sound scan of the brain to be carried out with a Dobbler study as well as a urine test, sweat test and a general blood test. Only a lack of iron is detected.   This aside and besides his insufficient weight, he continues with nasty regularity to get colds and suffer from respiratory encumberment.   In March 2003, his pediatrician prescribes twice a week kinesitherapy and he starts taking 0.6ml of "Fer in Sol" (Iron in solution) twice daily as well as 10 drops of Davitamon AD (a multivitamin in solution)

	At seven months old Xavier has doubled his birth weight but despite this the sessions of kinesitherapy do not seem to be helping, he doesn't seem to be progressing as a normal baby should (he doesn't turn onto his stomach...). He has had several colds and his nose and airways seem to be perpetually blocked.   Weakened by the fact that he had chicken pox at 6½ months, he atraps another infection of the respiratory system followed closely by bronchitis (medecines prescribed: Clamoxyl, ORS) but this time he loses 150gr that will eventually take him two weeks to regain. His pediatrician decides that its time to hospitalise Xavier for reassesment.

	At 9 months old Xavier weighs 7kg, measures 71.5 cm and has a cranial perimeter of 42.8 cm. At this point Xavier starts holding his own head up, he turns freely by himself onto his back and then back again onto his stomach but still can't sit up by himself. His reflexes seem good. His eyes track objects well and his hearing does not seem impaired in any way. He is still as happy as ever and is making all sorts of sounds to himself but the everlasting nasal encumberment is still there and he seems ever so pale.   His shift from maternal milk to powdered seems to have worsened his digestive problems and his "weight curve", far from normal, is now getting worrying.   The 26th June 2003, Xavier re-enters St. Elizabeth Clinic for a series of medical exams (biology, blood, PH metering, urine test, ORL [nose, throat and ears], cardiovascular, neurological and respiratory) but everything seems OK, only the allergies test reveals that Xavier is allergic to the protein in cows milk.   The 1st July 2003 Xavier is hospitalised at Erasme (ULB) to undergo another series of tests asked for by his pediatrician (EMG, MRI, ultrasound scan of the heart and brain, ultrasound scan of the kidneys, X-Rays of the thorax, and an ophthalmologic asessment). The Neuropediatrician schedules cytogenetic tests, which look for serious genetic illnesses.   So Xavier undergoes his first MRI (Magnetic Resonance Imaging) which seems fine except for the  plagiocephaly on the left sie of his head which has been present since birth. The other exams all check out and the genetic research reveals no chromosonal problems and serious gentetic disorders (Steinert's disease, spinal amyotrophy) are dismissed. The ophthalmologic asessment shows an anomaly in the retina which will need to be rechecked.   He's suffering from a serious axial hypotonia (..since birth), microcytic anemia and his ever present allergy to the protein in cows milk.   Xavier changes to a soya based milk (Alsoy), has to take 1.2ml of Fer in Sol per day and has 3 sessions of of kinesitherapy and psychomotricity per week.

	10 months old and Xavier is baptised at the curch of St Thérèse d’Avila (27th July, Brussels) but during the reception he is sick, which seems to happen every time there's something which he's not used to and lots of people he doesn't know. Then again, there's not really that many people in attendance: his godmother, godfather, his parents, his grandparents, his uncles and the best friends of his father. His mom and grandma change his cloths and take him for a stroll in the nearby park. Xavier seems to feel reassured after this and quickly finds his normal rhythm. He even seems to be more at ease with his paternal grandparents and uncles who have come from England specially for the occasion (he hadn't seem them since just after he was born). Unfortunately that night, he is feverish and not for the last time, he has a cold coming on.   The week after, he has his first big trip which is to the seaside and then Brugges. He has a real good time and accepts to play with his uncles without complaint. However, despite all the precautions taken, he still manages to get a cold (medecines prescribed: Rinathiol, Perdolan).

	At 12 months he weighs 8kg 150 (below the normal minimum for his age), measures 76 cm (above the normal maximum for his age) and his cranial perimeter is  44.3 cm (just on the edge of the normal minimun for his age).   To be sure that he doens't get ill, we throw just a small party to celebrate his first birthday including his godmother, godfather and a good family friend. He shows a real joy in receiving and opening presents. He is really sociable and shows a willingness to play with all and sundry. He continues to evolve and grow, still as happy as ever and he's discovered getting about by rolling, which he does at an incredible speed which overcomes the fact that he's not crawling yet. The psychomotricity seems to be going OK although progress is slow.   At this time, his kinesitherapists do a progress report which concludes : "We still see in Xavier a persistant axial hypotonia and articular instability coupled with a severe developmental delay (Xavier can neither sit or remain in a seated position by himself). His motricity is still poor and he exhibits a lack of muscular control".   He has several chills and is sometimes sick, he has once more a pharyngitis and his pediatrician prescribes more antibiotics and 2ml of motilium to be taken before eating. He is still very pale, but his general humour is good. This year, he has not been very often to the creche.   The 1st of October 2003, he is admitted once again to the hospital at Erasme. He has a blood test to verify his allergies and anemia, an electroretinogramme (which is normal) and he sees in consultation once more his neuropediatrician, who sees nothing else to do but continue on the course of treatment he is following.

	At 15 months he weighs 8kg 200 and measures 77.5 cm. His cranial perimeter hasn't been measured  but it was  44.3 cm at 14 and a half months. He hasn't really gained much weight to speak of, because these last three months he's really been in a state of flux.   Xavier has been ill often and come Christmas eve, he's got bronchitis again. (Medecines presrcibed: Ceclor, Neobactracine).   Despite this his development progresses and he can finally sit up all by himself, although he has a tendence to fall backwards or onto his side. He's starting to crawl and has found out how to throw things. He is also developing his social skills and is a lot happier to be with others as well as play with them.   Xavier has his first real holiday: 10 days with his parents in England at his paternal grandparents house.   The day he comes back to Belgium, at the beginning of Janruary, Xavier goes crazy at seeing the environment he is familiar with as well as seeing his maternal grandmother again after an extended period away from her, but as with any emotional occasion he is physically sick and starts trembling. That night, he sleeps with his parents.

	At 16 months Xavier weighs 8kg 870, measures 79 cm and has a cranial perimeter of 45.2 cm. He is finally sitting upright by himslef without any problems and is muttering his first sylables although no real words are actually being formed. His attention is very short and he is unsatisfied to stay doing the same activity for more than a few minutes even though he's attitude is good and he's very active.   However, towards the end of Janruary, his gastroesophageal reflux has gotten worse and between the 26th and 30th of Janruary, he is sick several times. Every time he is sick, he throws up what he ate the day before.   His pediatrician, Doctor Soumoy, is absent so his mum goes to the emergency services at Saint Michel, but nothing is found. The pediatrician at the hospital advises her to give him Motilium, rice and carrot water and antidehydration solution.   Xavier continues, on and off, to be sick but it doesn't bother him in the slightest, he just gets up and starts playing again asif nothing had happened.   On the night of Saturday the 5th Febuary, he is sick again and his whole body trembles. He doesn't have a fever and is easily rocked back to sleep. This time his mum decides to wait until the next day to see if the condition continues, before going to emergencies, because every time she has done this in the past the pediatrician has not seemed to believe her due to the lack of a fever and the fact that Xavier seems fine.   Sunday and the day seems to pass well although Xavier seems calmer than usual and slightly apathetic. He's got a deep frown and seems to be paler than usual. He doesn't want to play very much, eats very little and comes seeking cuddles from either his mum or grandma.   Monday the 9th of Febuary, mum takes Xavier to see his pediatrician, Doctor Soumoy. Xavier is 1 centimeter bigger but has lost a worrying 500gr. Faced with this, his pediatrician decides to hospitalise him immediatly.   He is admitted with some urgency to St Elizabeth suffering from what is believed to be gastroenteritis. Xavier is thin, pale and very grouchy. He lacks any kind of force in his limbs and his hands and feet are cold to the touch with proper recolouration on the limit of what's considered normal.   He is put onto a drip for twelve hours then fed by mouth, taking Motilium also, but he starts once more to be intermitently sick ( one day he would, the next he wouldn't). The infection tests all come back negative, but as he has a severe staturo-ponderal delay coupled with dietry problems, there is a risk of malnurtrition.   The doctors lack any kind of real idea about what is going on, all they can do is state the obvious which is, abnormal progress in his weight ratio curve and cranial perimeter to age ratio.   The 16th of Febuary, Xavier is transfered to the Universtiy Clinic of Saint Luc (UCL) where he is once more put on a drip and fed by gavage ( a tube through the nose going all the way to the entrance of the stomach), Pregestimil, until he regains his initial weight of 8kg 390 for a height of 80 cm but as soon as he starts taking soya milk again by normal means he develops symptoms of gastroenteritis. Xavier loses in two days the weight he has gained over the last two weeks, the tubes are reinserted in his nose and new tests are scheduled.   The blood tests come back showing that Xavier is also allergic to soya milk. He starts taking Peptijunior with a hypoallergenic diet. The PH metering test also shows that Xavier has a severe Gastroesophageal Reflux.   The other exam results are all without characteristic (culture of urinary sediments, cardiac echography, abdominal echography, EEG  (Electroencephalography), ophthalmologic examination,  neurophysiological examination of the visual potential).   From that point on, Xavier must take 5ml of Zantac twice per day in the morning and evening, 2.5ml of Motilium 15 minutes before every meal and the Iron solution he is taking is augmented to 1.2ml twice per day. He also has to take every morning an Oligostim Mg pill (Magnesium) and 10 drops of Davitamon AD (multivitamins in solution).   The neurological exam shows once more the plagiocephaly that Xavier has had since birth and axial hypotonia with general muscle weakness. Genetic tests are scheduled to elimate the possibility that Xavier has Steinert's disease.   His pediatrician notes in her report : "His face has an odd aspect and his ears stick out, both his fingers and toes are large".   Despite his condition, Xavier is aware, happy and shows no signs of being dehydrated. Quickly, Xavier perks right up and starts playing happily, showing no real discomfort at being in hospital. Every single time Xavier has been hospitalised, it's been his mum that's stayed with him night and day. This time round his father fills in at the weekend to give his mum, who's pregnant, a break. Whenever gradma comes visiting, it' the fiesta! Xavier takes her by the hand and leads her off to explore the corridors of Saint Luc whether its on his tricycle, in his pram or on his feet.   In the admittance reports, it indicates that Xavier has a disruption in his cranial perimeter curve as well as his weight curve since the age of 5 months. We don't agree with this as his medical journal proves that he had no problems up until Janurary (16 months). It's the same for his weight curve, which was regular (even if under weight) until the same period. It should not be forgotten that he was very often sick: 2 bronchitis, otitises, nasopharyngitis, colds and allergies.   The 17th  March 2004, he weighs 9kg 320, measures 80 cm and has a cranial perimeter of  45 cm, he can finally go home. The report indicates that his psychomotor delay, the break in both his weight and cranial perimeter curves are due principally to his consecutive allergies to cows milk and then soya milk.   In order to give him enough time to recover, a general  assessment and an MRI are scheduled for just before his 2nd birthday because of his psychomotricity delay and the disruption of his cranial perimeter curve.   The week after his return, he restarts doing his physical therapy 3 times a week and at the start of April he can finally start going back to the crèche, which he adores.   Since this long hospitalization, he sleeps poorly during the night and won't go to sleep straight away. It’s necessary that one of his parents sends him off to sleep, then puts him to bed. For his afternoon nap, he’ll only do it if either his mum or his dad stays with him. His pediatrician reassures his parents: “It’s a normal attitude considering the long duration of his last hospitalization".

	The 29th of March, at the time of his check up with his neuropediatrician at St. Luc, he weighs 9kg 520, measures 81 cm and has a cranial perimeter of 45.5cm. She finds him generally to be in good health, thinks that his motricity is getting better and his reflexes are good.   At 18 and a half months he falls, once more, seriously ill. He is sick and has a high fever. His mum takes him to emergencies several times and despite the medication (Ceclor,  Soframicine,  Muco Rhinathiol , ORS) there is little improvement. He coughs a lot, he’s very pale and the bags under his eyes are more pronounced than usual. He appetite is poor and he's lost weight.   The 14th of April, he has an X-ray of the thorax done. He has a peribronchitis which risks turning into pneumonia.   The 22nd of April and Xavier is doing better. He is still pale and his eyes are ringed but he is no longer being sick, doesn't have any signs of fever and is starting to regain weight.

	At 19 and a half months old, Xavier has finally tripled his birth weight, He now weighs 9kg 770, measures 84.5 cm and has a cranial perimeter of 45.8 cm. His development is progressing well and he is just as supple as ever, he’s pretty reckless and has no fear of open spaces or drops and when he wants to get into the bath or out of bed, he just heads for the nearest edge, head first without worrying about any of the consequences. Because of this, he now has a safety net placed over his cot to stop him climbing out.   The 7th of May 2004 Xavier falls ill with yet another nasopharyngitis accompanied by a fever and being sick. He starts taking antibiotics again.   The 18th of May 2004 we take Xavier to St. Luc to see a child’s dentist because his teeth are turning a nasty grey colour due to the quantity of iron he is taking since being only a few months old. We have to brush his teeth with a special toothpaste from now on (A new appointment is scheduled for 6 months time if there is no improvement).

	The 4th of June 2004, Doctor Soumoy finally tells us that Xavier no longer needs to take his iron supplements as he is no longer anemic although, to us, he still seems worryingly pale.   Mid June, Xavier is once more sick and feverish and his mum decides to take him to see his pediatrician at St. Michel. He has again a nasopharyngitis (Neobactracine, Perdolan, Clamoxyl).

	Wednesday 14th July 2004, the crèche telephones, Xavier is feverish again. His mum goes to pick him up and due to the fact that his pediatrician is unavailable, she takes him to emergencies from which she will keep the memories of a bad experience. As well as this, she takes him to see the family doctor. He's got chicken-pox. This is most strange, as Xavier has already had chicken-pox, but she learns with some surprise that it’s possible to catch it a second time.

	On Saturday 24 July 2004, his baby brother is born at the Clinic St. Michel.   All goes well with the delivery and his dad and mum are over the moon. Alexander is a beautiful baby that looks a lot like his big brother Xavier.   That evening Xavier stays at home with his grandma. His mum is at the maternity ward of the hospital, and his dad stays close to her and to his little brother all day long. That evening, Xavier, his grand mother and godfather go visit them at the hospital, then they all go home leaving Joelle and Alexander to a well deserved rest. Xavier is feeling a little jealous of course, but he already loves his brother….   Xavier is now 22 months old. He is still in constant “progression”. Although he still often has colds, he only vomits once in a long while, and keeps putting weight on.   At the end of the month of July his paternal grandparents come over from England to spend a few days in Belgium and celebrate Alexander’s birth. Even though he hasn’t seen them since the New Year, Xavier isn’t too shy, and agrees to stay alone with them while his parents go to city hall to register Alexander’s birth.   On Sunday we all went for a pick nick at the Bois de la Cambre. Xavier has a lot of fun there, even if he still is feeling a little jealous because of all the attention his mum gives Alexander. He wants her, and only her to push him around on his tricycle.   Going home that evening he vomits, is running a fever and is clogged up, although it was a beautiful sunny day.   He runs around fine on all fours, is starting to get on his knees, can stand alone for a few seconds and is still as supple as ever. He ”baby talks” monosyllables, still won’t say mum or dad, and doesn’t respond to hand waves to say hello or good bye.   He does, however, love to speak over the phone, using his own coded language, (bl…, bl…, bl…) He demands it loudly every time he hears it ring.   Xavier is starting to point to things he wants, is starting to take and to give, and to choose his favorite objects. He just must use the same things adults do: the phone, the PC’s mouse and keyboard, the remote controls to turn the TV on and off, machines, and his dad’s guitar. It is useless to try to replace these things with toys; he doesn’t go for it and is a bit capricious. He tends to get angry if we don’t let him have his own way.   He has always loved music, and has learned to wave his hands in rhythm, following a nursery rhyme tune he learned at the day care center. Musical toys are his favorites.   Xavier knows what he wants. He is short tempered, but all it takes is to shift his attention to something new, and he quickly finds his smiley face again.   His kinesitherapists have drafted a neuromotor report in which they conclude that: “...Xavier still presents antiquated movements with tremors.. His equilibrium reactions are improving but remain under the norm for his age and still show instability, which is more evident on the left side than on the right… The gripping of objects remains rather crude and hypotonic, with the thumbs remaining in adduction and not permitting an easy thumb-index grip. Xavier’s motricity has improved but remains inconstant and disorganized, his axial hypotonia and a marked instability, mainly from the hips and posterior. The antigravity functions remain poor. The locomotive function is improving but remains rather limited for his age...”   On 15 August 2004 Xavier returns to St. Luc hospital for a few days to have his neurological assessment done and to see an ORL doctor to find out more about why he is not talking.   This time his dad stays with him, night and day. His mum goes along to help set things up, then heads back home every three hours to feed Alexander, who is now one and a half months old.   When we check Xavier into the hospital he weighs 10Kg 350, measures 86.5 cm and has a cranial perimeter of 46 cm.   The ORL exam finds cerumen plugging up both ears.   The cardio pulmonary exam is normal.   After the neurological exam his neuropediatricain notes: “Smiling and in good general health. We still notice hyper laxity, long fingers and toes. He is able to stand by himself and can walk a few steps. We notice a bucco-facial apraxia, The Denver Development Screening Test results show: Social contact 11-13 months, fine motricity 9-10 months, language 7 to 9 months, global motricity 11 to 13 months for a chronological age of 23 months.”     THE 16th OF AUGUST, AN MRI SHOWS AN ANOMALY IN THE WHITE MATTER OF THE BRAIN Other exams are immediately scheduled including a lumbar puncture which is done the same day. Luckily Xavier didn’t even notice the procedure being performed, he just fell asleep.     MRI Anomaly in the white matter of the brain EMG + Nerve Conduction Normal Lumbar Punture Normal Cavum X-Ray Normal Ophthalmologic assessment Normal Urine Analysis Normal Blood tests Still anemic ORL (Ear, Nose, Throat) Sero-mucoid otitis media   Wednesday 18th August, Xavier comes home with a treatment for his ear infection (Lysox, Malafen, Nesivite), he has to take 3.5ml of Fer in Sol twice a day and has to continue taking Zantac and Motilium.   Despite all the exams he’s been through, he’s still happy and playing as though nothing had happened, the hospitalization has strengthened the bond between Xavier and his dad and now, every night, it’s dad that goes to bed with Xavier to put him to sleep whilst his mum is taking care of his little brother. Xavier has understood that the family now has more members and from time to time he gets a little jealous when he sees his mum spending too much time with Alexander but he has his grandma all to himself, who can't hold Alexander in front of Xavier, but otherwise everything goes well.   In one months time he has to see the ORL doctor for an audiometry and his parents have a meeting with his neuropediatrician October 1st to learn the scope of the other exams that had been scheduled to take place. She’s great with Xavier and his parents, she answers all their questions and gives them her direct phone number as well as the number for her pager so that they can contact her at any time. She promises to call them as soon as she has some answers.   The week after his departure, his mum phones his neuropediatrician to ask her which anomaly of the white matter Xavier is suffering from:     IT'S THE FIRST TIME WE HEAR THE WORD: " LEUKODYSTROPHY "

	As he turns 23 months old Xavier keeps progressing. He can finally walk alone, but is still very unsteady and falls down a lot. Each time, he gets right back up, and off he goes. It seems he hardly feels any pain, he seldom cries when he falls or bumps his head. He usually starts crying later, only when he notices that we are worried.   Early September The neuro pediatrician calls and informs us that the results of the lumbar puncture are good, but that she still doesn’t know which leukodystrophy Xavier is suffering from.   In the report she sends to Xavier’s pediatrician, she indicates that the long chain fatty acids and the in depth ethiological assessment (genetic, chromosomic chart) are still underway. As for the metabolical assessment, the amino acids are normal, the lysosomial enzymes tests have ruled out some leukodystrophies, and the tests for Krabbe disease are as yet incomplete.   We are also doing a considerable amount of research on our own, and learn a lot about these terrible illnesses. Above all else, we understand that, for the most part, they are incurable, and deadly.   September 14 2004. Xavier now weighs 10kg 800, measures 88cm and has a cranial perimeter of 46cm. He is feverish, has a cold and we must visit his pediatrician again. He spends the rest of the week at home, under medication, but remains active and cheerful.

	September 24th 2004. Xavier is two years old today. A visit to the ORL and a check of his audiometry confirms he is suffering from a bilateral middle ear infection , with hearing disorders. A date is set for his hospitalization in mid October, to drain his ears.   That afternoon, Xavier goes to the day care center where they have organized a little birthday party for him. He is so surprised he even forgets about opening his presents, although opening presents is one of his favorite activities.   On Sunday 26th September 2004, Xavier is invited, with his parents and grand mother, to celebrate his birthday at a friend’s house. There, he will be able to play with two children his own age, in a big garden. He vomits as we arrive at the party. Once again, after being bathed and changed, he plays and has fun as if nothing had happened. Again, he has a cold.   October 1st 2004. At last the day has come for the appointment with Xavier’s neuropediatrician.  At last we are going to know. Never has time seemed longer to us than from August 18 until today. We have counted the days. His daddy being busy that day, we go there without him.   But the neuropediarician has not received all the test results yet. The chromosonic charting and Krabbe disease tests are still underway. The results for the long chain fatty acids are normal, and several severe illnesses have been ruled out. She takes the time to explain the test results to us is detail, and promises to call us as soon has she has some answers.   That same day Xavier has an appointment with his pediatrician, he is suffering again from “rhinopharyngite”(antibiotics). Over a 15 day period he has lost 420 g. It will take him two weeks to put that weight back on. Still, his evolution is constant.   Xavier is now 24 and one half month old. He weighs 10 Kg 380, he walks by himself, and, even if he is still unstable, he runs around the house, screaming his head off. But he constantly has colds, he his always very pale, and, sometimes, he cries for no apparent reason, as if he were in pain. But when he happens to fall down, he doesn’t cry.   On Friday October 8th 2004 his neuro pediatrician calls us. She asks us to come see her the same day. She won’t say anything over the phone but gives us an appointment to come see her that evening at 7PM. Alexander stays at home with his grandma and Xavier accompanies his parents.     19H30 WE KNOW, IT'S: " KRABBE'S DISEASE " We are devastated to find out that Xavier has late onset infantile Krabbe's disease for which there is no treatment, the only possible solution is a transplant, but we must move quickly, because his neuropediatrician does not believe that we have much time ahead of us.   At this stage we decide to fight and to collect as much information as possible information to save our little Xavier, we took the decision to create this site.   From now we will keep a journal of Xavier's evolution.   As soon as possible we will update information that we will have collected on the possible solutions and the scientific advances, because if in the USA, there are sites and research specific to Krabbe's disease, that doesn't mean to say there we are at the same level here in Europe.   We also created this site to help other parents, in our case, to know and understand this terrible disease.   Xavier's Mum and Grandma.