Meet Ty…..He is 5 years old and he is fighting for his life!
Ty is a little boy with Hemophilia & a rare autoimmune disease. He is currently in the hospital fighting for his life.
Ty was born with Hemophlia: A rare (& in his case, genetic) disorder that prevents the blood from clotting properly. There is no cure for the disease, however there are treatments available…Between the ages of 2-3 years, he started to develop other symptoms that were not related to hemophilia. Reoccurring fevers, enlarged liver & spleen, low white blood cell count, high liver enzymes, inflamation as well as nodules on the lungs, ect. These ‘flares’ would last anywhere from a week or two, sometimes longer. Ty has been fighting for his life for years….a parent’s worst nightmare! I can not imagine how his amazing mother, Laura has endured while watching her little man suffer!
He was then tested for anything & everything you could think of, but all blood tests & cultures turned up negative & after about 13 months they were sent to UAB to see a rheumatologist who ended up diagnosing him with an autoimmune disorder called Sarcoidosis. He started treatment for that which consisted of prednisone (steroid) & methatrexate (chemotherapy), & went for almost five months without any flares. When it came time to tapper him off of the steroid, the flares started up again. Super-high fevers, organs enlarged, low blood count, etc. So different medications were added to his treatment for the autoimmine disorder & nothing seemed to be working & further testing has lead them to believe that the diagnoses of Sarcoid wasnt correct & he may have a different type called ALPS (Autoimmune Lymphoproliferative Syndrome). He was started on a new medication for ALPS, but within days of starting this new medication he developed an internal GI bleed (he is more susceptible to bleeding because of the hemophilia) & one of the side effects from the medication IS hemorrhaging…so back to the hospital they went to gain control of the bleeding in his stomach. They immediately discontinued the new medication along with the prednisone (he was recently put back on bc so far, its the only thing he has responded to in reguards to the symptoms from the autoimmune disease), unfortunately because they had to discontinue the steroid, he had another flare up. The GI bleed stopped after about 5 days (with receiving ’round the clock doses of clotting factor) & they were sent back out on the floor from the PICU. However, the symptoms from the autoimmune flare were not getting any better…He had a terrible, ‘dry’ cough and horrible fevers…the situation with his lungs continued to get worse & he got to a point where his level of oxygen was affected & around midnight June 28th, they were moved back to the PICU. Later in the day it was decided by his team of doctors (who are amazing) that the best thing to do at this point would be to intubate him. His little body had been through so much that he wasnt strong enough to heal and recover on his own, but once he was intubated, the vent would be doing all of the work FOR him and that he would be able to gain his strength and have a better chance of fighting off the infection in his lungs along with everything else. Being put on the vent required him to have to be in a medically induced coma/sedated & under a paralytic (so he couldnt move to prevent the possibility of pulling out the tube or any other IVs). They also gave him medicine to control pain as well as something that basically gives him amnesia in hopes that he won’t remember any of it…He stayed like this for about 8 days before they temporarily took him off the paralytic to check his level of sedation and pain management. He did GREAT. Stayed off for a total of 5 hours the first day! They have continued taking him off the paralytic for about 5 days now and each day he seems to get a little stronger and show a little more improvement. He still isnt ‘out of the woods’ by no means & has a long road of recovery ahead of him, but he has come such a long way from where he started!
This image of sweet Ty always makes me cry! I can not imagine watching my child endure what Ty has endured! His mother is amazing! Laura and Ty desperately need our prayers and support! I am conducting a FUNDRAISER for this sweet family. If you would like to participate, please head to http://www.youravon.com/wendywynne, select ONLINE EVENTS and begin SHOPPING FOR A CAUSE! When you check out please put in the promotional code Fightingforty. A percentage of the sales will be given to Laura and Ty for any financial needs they may have. As I am very sure you can imagine, the financial burden that come with having a sick child are exponential! Let’s help this amazing family!
Supporting others is VERY STYLISH!
Like the Fighting for Ty Facebook page for details of his journey!
Please send up many prayers and support Laura and Ty!!