Header Banner Made with MyBannerMaker.com! Click here to make your own!July 30th, 2008 Riggin Mathew Tangbakken was diagnosed with a rare syndrome called FG Syndrome.
I search for an answer for 3yrs, but nothing could prepare me for the answer I would receive on that day.
FG Syndrome is a rare syndrome that is heredatary and came way back in my blood lines, we had no way of knowing I was a carrier.
Riggin who is now 3yrs old and weights 25lbs and is 34inches tall, has only grow approximently 5inches in 3yrs and has just finally tripled his birth weight this pass year, which he was suppose to do by the time he was a year old.
This rare syndrome isn't only affecting my son Riggin, my two older boys are affected by it as well, with many symptoms some not as severe as Riggin and I myself as a carrier am affected by this as well. They are pretty sure I have Lupus and that it's already affecting my kidneys and probably my pancrease. The news was a complete shock, on top of this, Riggin has Severe hypatonia and is flying to see the Shriners at there hospital in Salt Lake City in Sept to see an Orthopedic doctor to see what can be done for Riggin's legs.
I want to think all of you that followed our story on our mission for an answer, it's been a long 3yrs, so now we began a search for a cure, at this time there is no cure for FG Syndrome nor is there a prognosis. We hand this to God and pray that he will give us the strength to get through this. God bless
He has tons of symptoms some minor some very serious, each one is dealt with accordingly.
1.Delayed bone age
2.webbed toes between 2/3
3.lowset ears and broad wide forhead
4.Sparce hair growth
5.curved 5th fingers
6.Delayed stomach emptying 50% and riggin's is only working at barely 10%
7.bowel's dont work with out med's
8.unable to speak, delay in motorskills, learning sign language
9.reflux
10.aspirating
11.short and small statue
12.squinty eye's
13.cronic ear infections even after surgery on ears
14. cronic infections every 2wks since birth
15. Iron Deficiency Anemia
16. Inability for nurological reasons to swallow solid foods
17. Oral apraxia
18.Pain in feet and leg's
19. Inconsistancies in hearing patterns
20.Severe to cronic constipation
21. Comprimised Immunsystem
22.unexplained fevers
23. Intestines dont digest
24. Sensory Intregration Disorder
25. OCD Obsessive complusive disorder
Riggin goes to doctors all over wyoming, utah and colorado,We work withAngel flight and Life Line Pilots to get us to Denver Children's.Riggin eat's through a tube and had stopped eatting by mouth almost completely. He wouldn't swollow solid foods or can't swollow solid foods. November 2008, Riggin started Growing again after placing a new tube in his intestines, since then, Riggin has learned to talk, is growing and thriving. God has answered our prayers.
We are desperate for answers and I wont stop the search until I know what can be done to help my angel.Please help me to spread support and awarness to families with sick children. This is my son and this is my cause. Help me in my fight to help him grow. God bless
www.helpingmegrow.com
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Riggin's Life
