My little girl, Zoe, was born May 23, 2009. She was perfect in every way. There were a few hiccups, one being her inability to put on weight, Doctors kept telling me that she was failing to thrive (Low body weight). She also had on going, sinus infections and colds. She would finish one lot of Antibiotics and then would need another lot. then when she was 15 months old we went to Australia on holidays for her first visit with my family since her birth. (My husband’s work has taken us to live in France).
When we were in Australia for a few weeks I knew she wasn’t well. She cried continuously.
She had flu like symptoms but nothing unusual (Meaning I wasn’t worried), I was just thinking it was a flu or another sinus infection which she had frequently since birth. Zoe took her first steps in Australia, which was a moment to celebrate for all the family. Little did we know, that celebration would be short lived.
We arrived back in France and Zoe was very lethargic and her appetite reduced tremendously (not that it was ever very big).
20 days after we arrived back in France she started getting fever’s which would start at around 4pm and would get to very high temperatures (between 38.8° and 41°), I took her to the doctor after the 2nd day. These fever’s were very strange. They would spike and then drop back to normal for a few hours and then spike again.would be short lived.
For roughly 6 hours each day I was watching her continuously because the doctor said that she must have caught a virus and to just give her Ibuprofen and Paracetamol alternately every 4 hours, yet even these medications did nothing. After 4 days of watching and waiting I took her back to the doctor’s because Zoe could no longer walk, crawl or roll over. she was hardly eating and she would whimper continuously.
I knew in my gut that something was wrong but when I went back to the doctor with Zoe screaming each time he touched her, he said she was fine, that she just had the flu and if she wasn’t walking or crawling again within a month I should go back and see him
We saw Zoe’s paediatrician (who had retired a month before we went to Australia) one day
and I spoke to her about Zoe and she told me to go straight back to the doctor and demand a blood test and x-rays of her legs and hips. This time I went with my husband. The doctor didn’t question me this time and he sent us to a rural hospital for X-rays. By this stage Zoe could no longer straighten her legs.
During the X-ray two ladies started pulling on her legs, thinking that she was curling her legs up because she was scared and I started yelling at them to stop because they were hurting her but I was yelling in English and no one understood or paid attention. Zoe vomited all over herself. The X-rays came up clear. I was devastated. I didn’t understand what was going on with my precious little girl
I took the X-rays back to the doctor that afternoon and apparently Zoe’s paediatrician had been making phone calls and checking up, so seeing the clear x-rays he decided to send us to the nearest city hospital for further tests.
Zoe was hospitalized for a week, and I was beyond stressed and therefore unable to speak French, luckily the head Paediatrician of the hospital could speak English and he tried his best to explain what they were testing for and that they were trying to eliminate diseases like Cancer, MS, Kawasaki disease,etc.
We were then sent to another hospital in Paris. This time it was the Children’s hospital with a service for Rare disease.
After 5 months of regular tests, Zoe was finally diagnosed with Systemic Juvenile Idiopathic Arthritis (Please note, the name of this disease is in the process of being changed, I believe the new name will be Juvenile Systemic Idiopathic Autoimmune Inflammatory Disease).
She had organ involvement (Lungs, Liver, Spleen), Anaemia, Both Ankles, Both Knees and hips, wrists, elbow and shoulders were all involved. Now four years on, every joint from her Jaw to her toes are involved, including the spine.
Once she was diagnosed she started on Kineret and we gave her a daily injection at home. Within 8 days she took her first steps since getting sick. It was a very emotional moment for us.
But she started getting big lumps in her legs and we had to stop the treatment of Kineret. At 19 months of age she was put on fortnightly infusions of Actemra and she was able to continue with this medication for 2 and a half years before she developed antibodies against the medication.
She is now on a Trial drug in France. This drug is unavailable in Australia, so coming home to visit family is very hard.
Now most days she can walk, run, climb and jump like any other child her age. Then there are days where the pain and fatigue become too much and she needs her wheelchair. She has Hydrotherapy 3 days a week, Physiotherapy once a week, Occupational Therapy 2 times a month. Fortnightly blood draws and her injections once every 3 weeks.
Her immune system is compromised, so having her around other children can become stressful. As this is, for the most part, an invisible illness and yet a severely disabling disease, people look at Zoe and don’t always understand just how serious it can be. A common cold, chicken Pox, etc can potentially take her life. We as a family cancel things at the last minute.
I now cringe when I see snotty, coughing children. I want to grab Zoe and run. It is hard to protect her from all passing or seasonal illnesses and at the same time let her have a somewhat “NORMAL” childhood. Finding balance is our daily struggle.
Zoe has been living with SJIA since birth. We hope that one day, there will be a cure.