Daniel was induced at 37 weeks and born with #NeonatalPneumonia and at 6 weeks started developing a rash on his neck which after numerous creams and antibiotics, spread all over his body. One of the most dreadful moments of my life was when Daniel was about 8 weeks old and a biopsy was taken from his groin when the anesthetic had not yet worked- I can still hear his cries in my head. We were told he had #Snedden Wilkinson Disease (mostly found in women over 40!) and he was given a medication used to treat leprosy and never given to infants before- needless to say, it did’t help because he didn’t have Snedden Wilkinson. After 2 different dermatologists and no
answers, we stopped all the medication and resorted to prayer and miraculously,
Daniels skin cleared.
Over the next few years Daniel would often have red spots on his neck area which we put down to a sensitivity to wool and creams, soaps etc. For a few years, things were good, Daniel had a couple of unexplained sore knees and some periods of extreme lethargy, unexplained random fevers with no other symptoms and struggles in grade 0 with his fine motor skills. In 2014 when Daniel started grade 1, our lives turned upside down. Daniels youngest brother Jason was born at the end of January and towards the middle of February, we noticed a rash on Daniels back! We watched it like hawks and applied cortisone creams from our doctor and internal cortisone too- but it just kept spreading and getting worse- Daniel complained of pain in him limbs and the rash continued to spread, with blistered and skin peeling off in front of our eyes.
On the morning, which my husband ran his qualifier for Comrades, with the help of my dad (my mom was with Adam, then 3, and Jason who was just 5 weeks old) I carried Daniel into the emergency room at Olivedale Clinic for what was to be the most harrowing and scary time. Gerald stayed with Daniel 24 hours as I was still feeding Jason at night. During the day, we played tag team and tried to cope with our boy going through hell. The doctors had never seen anything like it,he was kept in an isolation ward and became a human guinea pig, several drips, 4 different biopsies, experimental drugs- like 7 different antibiotics at once, just in case- no answers. We were sent home and told to wait and see, that he was safer at home than in the hospital surrounded by germs. We slowly watched Daniel shed all his skin, including his face and feet, we were excited that new skin formed underneath and felt like maybe we were winning- but we weren’t.
After just 2 weeks, the rash started again- as bad as the first time, no matter what we tried, nothing could stop it. With the help of google (I spent every waking hour researching every word the doctors mentioned along with his symptoms and pictures of rashes- I diagnosed Daniel’s joints with Juvenile Arthritis and his skin as Pustular #Psoriasis. Daniels Paediatrician disagreed but booked us an appointment with Dr Faller, a Paediatric Rheumatologist who did an ultrasound on his joints and confirmed my diagnosis- Daniel had Juvenile Psoriatic Arthritis and Generalized Pustular Psoriasis (possibly the only person with this form and this degree of severity in SA) We finally had a diagnosis and a way forward with treatment, however we weren’t on a medical aid plan that would cover him as he was too -rare-and the Methotrexate wasn’t enough- his skin continued a 3rd time and a 4th time to blister off his entire body.
We met with an amazing Dermatologist (our fifth one) Dr Levy who in consultation with Dr Faller put Daniel onto Cyclosporine, Dapsone and Prednisone in addition to the 8 tablets of Methotrexate he was already on- this finally brought some relief and we managed to halt the severity of the cycle. In 2015 we increased our medical aid and Daniel was approved for Enbrel- it changed our lives as he could attend school consistently again. What we didn’t anticipate was the post traumatic stress, the horrendous bullying and severe anxiety. We tried as much as we
could to keep him normal but finally realized last year that he is not, nor would ever be
normal, he is better than normal! He moved schools at the start of this year in grade 4 and we are so proud of his resilience and his inner strength. He has endured pain like we cannot imaging (described like that of 3rd degree burns) and he can still smile.
We have had some really tough times mentally as he worries a lot about his skin (as do we), whenever he gets sick or stressed, he gets spots which freaks him out but the Enbrel is still working for now and we are so grateful for medication which allows him to be a little boy again- but he does carry baggage with him. Daniel is still extremely self-conscious and has many times mentioned that he hates himself(not as much
now but he still Hates his Psoriasis). After his last cross country race where he proudly came 121st he asked if it meant he could stop having blood tests etc. because he is running and feeling so good- It is hard to have to explain that the only way he can do these things is due to his medication. Daniel’s new school has been amazing- really caring and compassionate- building his self-confidence and valuing him as Daniel!.
He no longer cuts himself (he started that when he was 7, trying to cope with the bullying and the emotions surrounding his disease- he is also on 50mg of Trepaline daily to help with his anxiety) and he has not missed a single day at his new school! He is playing sport and was awarded an Eagle Award last week for commitment and dedication to soccer last term and this term he is running cross country! I watch him with tears as I remember so clearly when he was unable to walk not long ago! This little boy is a miracle and an inspiration! He has been through so much in his short life and we never know when things might change- there is no guarantee that his meds will keep working, so we celebrate every milestone and achievement and try to let him be a little boy as much as possible. Our priorities as a family have changed through our journey with Daniel and we burst with pride when we watch how well he
is finally doing!