Metabum's Kawasaki Syndrome Families Database

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ALLAN FAMADULAN
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MANILA PHILIPPINES
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Im Mr. Allan Famadulan, from Philippines, last saturday i brought my son Alvi to the hospital because he has high fever on and off and he has some rushes in his eyes....upon conducting blood test the doctor find out his WBC count was very high beyond normal after two days in the hospital, rushes all over his body appears, his lips was so red, and become irritated.

upon consultation with doctors specialize in infections desease they told us it was KAWASAKI desease..we are clueless about this sickness...infact most of the people we talk often wonder what is KAWASAKI

the doctors told me it was curable, there is medicine that can cure this desease.
unfortunately...the cost of the medicine was to high for us to afford...my son has a hospital insurance amounting only to 125,000 pesos which is not enough to cover all medicine needed for him to recover....my son is now confine here in ST. LUKES HOSPITAL E. RODRIGUES ST. QUEZON CITY MANILA PHILIPPINES.

as of this date his hospital bill is already 154,000 pesos.....hope you can help us in his medical bill..for him to fully recover from this desease.....

Thank you so much..

MR. ALLAN FAMADULAN
73-J BROADWAY ST. BRGY. KALUSUGAN Q.C.
MANILA PHILIPPINES

TEL#411-13-71

CELL # 09285025754
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Kim
Location -
Auburn Hills, MI
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I am 33 years old. I was diagnosed with KW when I was 5. I do not believe I suffer from any complications due to KW, although I do wonder sometimes when doing cardio if my heart should be struggling as much as it is. One thing I'd like to stress to the parents of babies who've had KW...I strongly belive there is a conection between vaccinations and this disease. Think back if your child had recently been immunized before getting sick. There is not much research on this, and it would be extremely hard to find info, but there is a website "thinktwice.com" that I urge you to look at! I will not be immunizing my children after reading the alarming research on this subject.
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Nicole Dunaway
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Texas
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I had kawasaki syndrome when i was about 8 months old i ran a high grade fever for 21 days, my skin, toenails and finger nails all came off i was an orenge color till after i was one. I am going to be 25 in march. i have read that it doesnt affect your heart when you get older it comes does what its gonna do and either takes you or leaves and never bothers you again. I know this is nothing severe buti was diagnosed with mitral valve prolapse my heart skips beats sometimes. They say its not related but I think it is. I feel for all who have had this condition and wish you the best.
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Mandy Grieves
Location -
England
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My son Darryl had a heart attack early hours of Thursday morning 31st August 2006. He is 28 years old and after many tests including an angiogram they have discovered that he must have contracted Kawasaki's desease when he was a child.

He had glandular fever and was really ill with it when he was 15. The doctors said he had some sort of virus but were not sure what it was. They tested him for Lymphnode lukeamia but he was all clear.

They informed us that they couldn't test for anything else as they had no idea what is was. He got better and was allowed home.

He now has 2 blocked arteries and the left Aorta is partially blocked. He is going to have a triple bypass within three months.

He is a fit 28 year old. He was a tree surgeon by profession but obviously he won't be able to return to it.
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Rocha-Werren, Jacky
Location -
Berne,Switzerland
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Hello, i wrote the Story of our kid on the 2nd of Feb.2006. And now iam looking for someone that has the same experience as we. Sean still has his aneurysma, just one disapeared. we treat him with aspirin and Plavix. But lately he has allways blood in his shit. so we stop start and stop again. does anyone know that problem? And why iam also writting....Seans bloodresults are still not allright. He still shows lots of white bloodbodys (signs of an infection) and far to many bloodplates. We treat him since middle of Mai with stereoids but it does not really get much better. Please when you know someone that has simularities get in touch with me......thank you......and for all the others i wish you just good health
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Kathleen
Location -
Atlanta
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My son had KD when he was 4 years old...that was 1990. They did not really know much about it at that time but thanks to his Pediatrician, he was diagnosed relatively quickly (within 5 days). At that time they hospitalized him and gave him IV treatments of Sandoglobulin for 5 days. And aspirin. He was so sick and we were so scared. It was truly a nightmare.

When he got out of the hospital, they monitored him closely with LOTS of bloodwork, echo cardiagrams, EKGs, etc. He also took aspirin for a long time. They discovered that he had 2 anuerisms, an enlarged heart, and a congenital heart condition which they called a "silent PDA" (a small opening in one of his heart valves)...silent because it's usually identified with a heart murmur, but my son did not have that murmur.

Now for the good news... The good news is that, somewhere down the line, when he was about 6, he had a heart cath, and the doctor said that his heart looked like a normal 6 year old kid's heart (aside from the silent PDA) and that if he had not known about his history of KD, he'd never guess that he ever had any aneyurisms, nor enlarged heart. When he was about 12, he had surgery to repair the PDA (done with a heart cath) and he's all better. No PDA, no other heart conditions. He's a healthy 19 year old boy!

So do not give up hope!
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Nicki and Andy
Location -
Calne, UK
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Our little boy Joshua was 12 mths when he was diagnosed,5 days after falling il,and after a trip to the doctors, and 5 to the A & E department. No one knew what the matter was,a virus, chicken pox and scarlet fever were all diagnosed until we finally got to see a paediatrician. Josh was bad, raging temperature, nasty rash all over,strawberry lips, not eating, sleeping or drinking and was so miserable it was unreal. On the 5th day our instinct told us we were right all along to be concerned as the on call doctor at the local hospital sent us to the kids department. The paediatrician was fantastic, he took one look and knew it was KD straight away starting him on gamma glodin, asprin and penicillin. After 2 days he was better, still grumpy but that was to be expected as he had been through so much. The worrying part of it all was his heart, found later to be slightly enlarged on one artery but after asprin and 6 months we were told that the swelling had gone down and we dont need to go back until March 2007. We have been EXTREMELY lucky and are very grateful to all those that administered his medication and helped recovery, others have not been so fortunate. Josh is now a lively 20 mth old into everything and apart from his appetite being affected slightly he is a very special little boy to all that know him. Please feel free to contact us if you would like to do so, as this illness needs far more recognition.
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Hannah Sackett
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Honeoye Falls, New York
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I was a normal, active 11 year old girl. Because of my age it took the doctors 25 days with consistent fever of 104-107 degrees to agree on a diagnosis. We have one of the greatest children's hospitals in the country - yet I had to return within 24 hours of going home. Treatments that I have received so far: 3 x IVIG, 625 mg of aspirin 4 x daily (which did not work-the high fevers returned). Then, due to the extensive inflammation of my coronary arteries, the next treatment was 3 high level doses of methylpredizone (steroids). After 2 weeks in the hospital, and 72 hours fever free I finally am home, but . . . I am terribly week, sensitive to daylight, fatigued, irritable and full of muscle and joint pain.
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jennifer
Location -
ma
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Our son had Kd when he was 11 months old diagnosed 6-7 days later spent some time in the hospital .. followed up with a cardiologist. Almost 1 year later he has started with a rash on his soles of his feet and some on his leg The DR said I should not worry about KD because there is no constant fever ( he has not had any yesterday or today) But I just can't seem to stop thinking that this may be the beginning.. Is it possiable to have Kd twice ?
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Lisa
Location -
Baltimore
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My son is 2 years old and diagnosed with KD in Feb. He was given the treatment and recovered. It took about two weeks of recovering (during the two weeks he had severe muscle pain). In June 2006, he had a high fever and the same symptoms of KD so we took him back to the hospital. He came down with the same symptoms again. He received the treatment again and a couple of days after the treatment he came down with a fever and had to go back to the hospital for more treatment (three times in one year). Now, he is home. I did have to take him to the hosptial over the weekend because of a fever but they sent him home because it was not a consistent fever. He currently has muscle pain and is not playful like before. He prefers that I pick him up most of the time outside becuase he is too weak. He is now back into daycare with limited activity. He attends a daycare home with a family. I still worry about his recovery and wanting him to get back to himself (playful, tons of energy and so on). I hope and pray that this does not happen again. Research reports that 1-2% of children get the symptons again. I would like to talk with some parents that children did receive the symptoms again. And did they fully recover. I am also concerned about the little support I receive from the Cardiologist.
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uma and vincent odonnell
Location -
new york
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Please look for Kawasaki story on discovery health MYSTERY DIAGNOSIS.Stabbing sensation series on Dish satalite. Our son Nicky had KD in 2000. On 10th day he was finally diagnosed, after his little body went through hell and back. Between firing doctors and putting him on the prayer list. I am personally on a quest to raise awareness about Kawasaki Disease. I help out wit KDfoundation in New york. Please call your local legislators for Kawasaki Awareness week in your state or contact me and I can assist you. God Bess, Uma.
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Rita
Location -
Sterling Virginia
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We were just told that my sister has KD, man i had no idea anythng like this was gonna happen to us. i dont know much about KD. Back in april we took my sister to the hospital because she had a hugh ball on the side of her neck, doctors werent sure what it was so they popped it...i dunno but neways 15 days ago we took my sis to the hospital and just this tuesday we got told that she had KD, it wasnt found within the 10 days so is it permenent? ...Im so scared!!!! i love my lil sister sooo much shes only 1!!!!! HELP ME what can i do?
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Afsane
Location -
Iran
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I had kawasaki syndrome when I was 4 years old. Now I am 19.I just have bad memorrrrries.
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Afsane
Location -
Iran
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I had kawasaky syndrome when I was 4 years old. Now I am 19.I just have bad memorrrrries.
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Amanda Redhaed
Location -
Engjand
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Just before Christmas last year my 4 year old daughter Daisy Mae started complaining of a stiff neck and high temperature, concerned i took her straight to my doctors, there i was told it was a virus. after struggling to get her temperature down and a rash forming i took her back to my gp the following day.There again i was told it was still a virus.This went on for 2 more days until anger and instinct for not been listened to took me to the Accident and Emergency department of my local hospital. I was promptly seen by a fantastic doctor who told me Daisy was very poorly, maybe with measels or a disease called KD my head was in a spin of confusion. Daisys eyes were red and her tongue was purple. A rash was forming on her hands and fee and were becoming swollens her glands had become swollen too.The doctor ran some tests and explained to me that Daisy presented the KD symptoms and that IVIG treatment needed to begim immediately. I was frightened but needed to be strong for my precious baby girl. Daisy went through all her treatments with great courage and the IVIG had gone through and the asprin began. i tried everything to get the asprin down her, this was very hard as the taste is very unpleasant. After three days Daisy was returning to her old self just in time for Christmas.We had the heart scan an ECG to get through but i was just absorbing what a hard time we had all come through as a family.New Year and the heart scan we had all been dreading.The good news came no heart damage detected.Daisy will be closely monitored for a long time to come, but for us as a family we thank god every day that it was caught in time and will now face the future.
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Amanda Redhead
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Amanda Redhaed
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Engjand
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David
Location -
Houston, TX
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My son was diagnosed with KD last Monday 6/19. What an ordeal. We didn't know what it was. The doctors didn't know and thought it was strep. Finally on day 7 of high fever, I got home from work, and talked to the doctor, and told her that this isn't right. I looked at KD on the web earlier, and it matched but I figured the odds were too low for it to be it. I told her all the symptoms, and she said it was likely Kawasaki. We immediately got him to the ER, and then to Texas's Children's Hospital. He was immediatedly given IVIG, and then a second dose last Thursday night. I am hoping and praying for the best. This has been a nightmare. He is home now, but I am still a worried parent. His heart appears fine, but we are giving him high doses of aspirin. Luckily, TCH has seen many, many cases...
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JOSETTE RETO
Location -
EAST PITTSBURGH, PA
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EARLY FEBRUARY 2005 MY THEN 1 1/2 YEAR OLD WOKE UP WITH A STRANGE LOOKING RASH. THE NEXT MORNING THE RASH WAS ACCOMPANIED BY A FEAVER. I CALLED THE DOCTOR AND TOOK HIM IN THAT MORNING. THE DOCTOR SAID SHE THOUGHT IT WAS A VIRAL INFECTION AND TOLD ME TO GIVE HIM ADVIL, AND COME BACK IN SEVEN DAYS IF IT DIDN'T LOOK ANY BETTER. WELL THE NEXT MORNING HE WOKE UP THE SAME. ON THE FOURTH MORNING HIS EYES WERE SWOLLEN ALONG WITH HIS HANDS AND FEET. I CALLED THE DOCTORS AND TOLD THEM THAT I WANTED HIM SEEN AGAIN. I HAD TO ENTER THROUGH THE BACK DOOR. I GOT WORRIED WHEN THE DOCTOR GOT OUT HER MEDICAL BOOKS. SHE CALLED AN ID DOCTOR AT CHILDRENS HOSPITAL. THEY DECIDED THAT IT MIGHT BE KD, AND THAT I SHOULD BRING MY SON INTO THE HOSPITAL. HE WAS ADMITTED ON 2-10-05. THEY GAVE HIM THE IVIG AND WATCHED HIM FOR 48 HOURS. HIS EYELIDS PEALED ALONG WITH HIS HANDS AND FEET. IT WAS HORRABLE TO WATCH. AFTER HE WAS RELEASED FROM THE HOSPITAL HE HAD TO BE ON A DAILY DOSE OF ASPRIN. HE NOW GOES TO THE HOSPITAL EVERY SIX MONTHS TO A YEAR TO HAVE TESTS DONE ON HIS HEART. THE DOCTORS SAY THAT HE MAY HAVE HAD MINIMAL DAMAGE BUT THAT IT SEEMS TO BE HEALING ITSELF. I'M ALWAYS WATCHFUL OF HIS BEHAVIOR. WEATHER HE IS TIRED OR OUT OF BREATH, AND HOW WELL HE IS KEEPING UP WITH OTHER KIDS HIS AGE. HE IS DOING GREAT RIGHT NOW, AND HOPEFULLY IT WILL CONTINUE.
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Sarah Gover
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Newnan, Ga
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All I've ever heard about this disease is that after the IVIG is given the recovery period is speedy. It's been almost 3 months now and my son has been treated like a human pin cushion. Labs are being done every week except for the latest which was spread out to 3 weeks. His liver is still enlarged slightly and all of his levels are not in the normal range yet. So my question is what do they consider speedy? My son and I are ready for him to return to normal activities again. He is very upset that he will not be able to play football next fall according to his pediatrician. My son is so cranky all the time and tires easily. I would so appreciate hereing from others and their updated progress with KD. My original story is also posted on this site.
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Michelle
Location -
pearsall Tx
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On May 27 2000 my son Jesse (then 14 months) woke up cranky and feverish. I gave some tylenol and figured he was either coming down with a virus or was teething. Several hours later his fever was higher and we went to the emergancy room. Afrter what seemed like forever Iwas told it was a upper respitory infection given Keflex and sent home. By the next morning his eyes were swollen shut and his entire body was covered in a rash. back to the emergancy room where it was now Steven Johnson Syndrome. 6 shots of epinephren and 4 times the normal dose of motrin and wrapping his body in ice cold wet towels his fever went down to 101 from 104 and we where sent home again. I was not happy !!! Since I was on vaction I decided to cut it all short and I loaded my car up and I drove the 4 hours home to see Jesse's own doctor. When we got to the clinic she took one look at him and the history while all the time on the phone asking for a transport because she had no idea but was sure he was sick. I left my car and all our luggage at the clinic and took an ambulance to the childrens hospital an hour away. We wre there for another 3 days before a med student ask his attending if KD was possible.( the student had just finished a research paper on KD) The attending said the was one way to find out and did a blood test. Lo and behold it was.Ivig was givin. He had an aneryism but it has healed to almost nothing. Jesse has some behavior problems and some learning difficulties along with a lowered immune system but after KD I really think I can handle the small stuff
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Rachel M.
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Temecula, California
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I was reading some cases and wow was I amazed by some of the side effects some cases have had. I was 3 years old when I was diagnozed with KS disease. I am now 29 and I have dealt with Bi-polar, Bulimia, depression and digestive problems...Could there be any links to KS disease?
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mary st. james
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mpls mn
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My son, a twin, was diagnosed with KS at 5 months of age in 1977. It was at first diagnosed as Scarlet fever and it wasn't until his little fingers and toes were peeling that it was recognized and treated. He recovered and I did not think there was or would be any permanent effects. However, my son has had a difficult life with numerous physical and emotional health issues such as asthma and allergies, a serious staph infection, upper respirtory problems, ulcers, trouble sleeping, depression, and lack of motivation. At age 29, he has no job. I wonder now if any of these problems are related to his having KS as an infant and any way I can help him now.
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Chris Garcia
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Denver CO
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Well I have to be honest I really cant remember much about my case I was three years old but it sounds to me that most of the stories I've read are the stories that I hear when I ask my parents or older siblings. Now 28 years old I have just requested medical records from Children's Hospital here in Denver in hopes that I can finally feel that this is completely out of my system and that the treatment that was given to me is not going to effect me later on in life. I do have to say though I find my self short of breath and at times will have slight pain in my chest but i'm sure most of it is a mental thing at this point, just knowing that my heart was involved with KS makes me wonder. If anyone has been through this or is still going through this and has received any info I would greatly appreciate it if you could pass it along.
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Sarah Gover
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Newnan, Ga
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On March 13,2006 my 10 year old son became ill with a fever and vomitting. I gave him motrin for fever a tried to keep him hydrated then sent him to bed. At about 3:00 a.m. I awoke from hereing him calling out my name. I ran into his room and he said to me that his chest was hurting, I leaned over to feel his chest and before I put my hand on it I could see his heart was pounding hard and racing. Then when I touched his chest I could feel raised bumps that where only light pink at the time. His systems seemed to come on fast after that adding jaundic, pain in neck, hands swelling, painfull urination, strawberry tongue, testicle swelling, diahrea and the rash spreading from head to toe(I mean everywhere!). We were in the E.R. four times that week, on the fourth visit to the E.R. the doctor mention KD. I had never heard of this , the Dr. not knowing for sure was going to send us home again. I refused and insisted that he call a specialist. He called an ID Dr. and we were directed to go see him @ CHOA. The infectious disease(ID) Dr. confirmed the diagnosis of KD and my son received the IVIG. It is now the 3rd week of this ordeal and my son is healing slowly. We try to keep his spirits up by jokingly calling him Jake "The Snake" due to his now slothing skin. He thinks thats funny. I will soon be tearing out all of my carpet because of the slight possibility I brought this illness on by having them cleaned last month. I try not to guilt myself too much, but its hard he is my only son (my life) and I could not imagine anything ever happening to him. I want to say to everyone trust your instinct and trust in God. You know your child better than anyone so its your job to say no, that's not normal. Keep the Faith and God Bless You All!
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Dylan Patrick Hughes/ Tran
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Philadelphia, PA
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Today is a good day. TOday is my son's 2nd birthday. We had a great day, he smiled and loved the world and all that it had to offer. This day made possible with the past research of KD. My thoughts are after research on a subject that is not well known, I believe as a mother that this case was a result of visiting my sister's house after she had steam cleaned her carpets. Those were the only relations to other cases in the middle of summer a season unfamiliar with the disease. He was teething with a small hole from it coming through the gums. The doctors believed that that might have helped the allergens/cause enter his body. It's pretty ironic that you originally go into the hospital hoping it's nothing but your imagination, tests get run, a virus is diagnosed and you get sent home to the irony of going back in a panic and praying that they find what's wrong with them. that it is something, anything that they can pinpoint and then cure. The hours of waiting and countless tests later, you are in a blur of time and energies of staying positive for the kids, and realize that with such a rare disease you feel so alone. And when time passes and websites like this arise, We are not alone. Thank you for reading. Thank you for being you. Prayers go out to those looking for a cause , and those going through the blurry stages of the time and not knowing. God Bless, only a slightly enlraged left ventricle in this case, we were lucky, no medicine anymore, and we are down to yearly echos, at my request. thankyou. god bless.
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Charlie & Sylvie
Location -
québec
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My friend's son contracted Kawasaky syndrom when he was 5 years old. His name his Michaël et he is now 13. It took 7 days for de doctors to find that Mike was sick because of KS. He stayed at the hopital for more than 3 weeks, includind 7 days in intensive care. Permanent damages were done to his heart, his left et right coronary had big anevrism (10 to12 millimeters). He came back home, week et discouraged. Beaucause of the anevrisms he had to take medication «coumadin» and «aspirin». That medication is there to save his life but could take it at any time beaucause of the risks of fatal bleedind. This little kid had to stop playing like his friends. The life of his mother became a nightmare of always worrying for his safety. At 6, a child doesn't understand why he cannot go riding his bike or run with his friend or play soccer. Every physical activity becomes a risk. The family had to change their habits. Regular medical check up was necessary. The doctors were predicting a long life for Michaël but he had to continue with the medication and all of its restrains. At 10 years old, a good news, Mike can stop take Aspirin, that reducing his risk of bleeding. His heart condition his the same with two big anevrisms. February 3th 2006, Mike has to have a test by catheter to go sea inside is coronary. After the test, the doctor said, the procedure went well but I have to talk to you. The test revealed that the right coronary was totally blocked by stenosis and calcification. Mike's mother was totally devastated by that terrible news. What was even worse, no one could give answers to our questions. Mike is the first in our country to be in that condition. The team of doctors decided to contact some doctors in Japan to see what they do in these conditions. First thing, we have to forgive the right coronary, there is nothing to do to try to unblock it. For the left coronary they suggested to use the rotablator and put a stent between the two anevrisms.!
The procedure was scedualed on july 6th. A team of specialists was pu t together for the procedure. All that stress for that day and nothing of the procedure was done. They said is left coronary was blocked at 50% et the blood pressure was at 90%. These values indicated to them that the procedure wouldn't improve Mike condition and chose to wait. In December, 5 months later, the cardiologist called to inform us that Mike has to get the procedure as fast as possible and it should have been done last july. The cardiologist went to a congress in Argentina and saw a presentation of doctors from Japan. They presented a few cases like Mike. What they do in similar cases is that they use the rotablator by catheter to enlarge the coronary where there's stenosis. No stent seams necessary. They found that after the use of the rotablator, the width of the coronary stays stable. So this is the project in the near future for Mike. The procedure implicates that he will have to take more of anticoagulation medication. That means he will be at high risks of b leeding. He will be more limited in his activities. Last week, it was his birthday, he's now 13. Medications, medical treatments, restraint in day to day activities are in for his future. In all of that we only saw one moment of discouragement last summer because he's so positive, courageous, generous and full of dreams. He still believe that one day he's going to be cured! We wanted to share our story to tell others to keep hoping and living even if you have to fight for your child's health and quality of life! thank you
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Llinet Beltre Rosado
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Bronx, NY
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Hello all. First of all it feels good to know that you all exist because for a long time we felt as if we were aliens in that we did not understand how this could happen. My now 3 year old son Nickolas contracted KS in 12/04. It was a whole month before I diagnosed him. It went from fevers to a diagnosis of strep throught to a diagnosis of anal strp (yes that exits) to fevers strawberry mouth etc. Sleepless nights, almost lost my job, spousal argument stemming from pure exhaustation. Finally a very close friend of mine who is Asian told me it sounded like KS because her nephew had contracted it. I went to the Dr. and told him and sure enough he agreed. We went to Baby's Hospital and up until now Nickolas is okay but gets his echos every 6 months. What is fustrating is not knowing how he got it, he was not in childcare, he has a babysitter that took care of him at our then home. What is sad is that I do believe it has left an impact on him. He is always tired and gets sick frequently. I have been researching this for so long that I now believe it was the carpet in the house we rented. It is scary to think that I might lose him at a young age and I blame myself for not picking up on the carpet thing that was there before we moved in. In closing, it's good to know that there is a group of people I can talk to. I am initiating a cause of action against my prior landlady, I know that I can not directly prove KS to her negligence with that rug but I am going to try my best and I will keep you all posted.
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Toni Prieto
Location -
colton Cal
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MY SON WAS DIAGNOSESED KS WHEN HE WAS 7 MONTHS OLD. LIKE MOST OF THE STORIES IVE READ HE RECOVERD AND IS NOW GOING ON 21 YRS AND IS DOING GOOD. ALTHOUGH IN HIS YEARS OF SCHOOL HES HAD A HARD TIME LEARNING,HES BEEN IN RSP CLASSES THROUGHOUT HIS SCHOOL YEARS.I THINK KS AFFECTED HIS LEARNING,BUT I DONT KNOW FOR SURE.
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