RIGGIN'S STORY FOLLOWS

Hi my name is Riggin, I'm a survivor of a rare syndrome called FG Syndrome. Here is my mom's story about me.

Riggin Mathew Tangbakken was born full term on June 24, 2005, normal pregnancy and healthy delivery. Riggin had some health issue's from the start, Riggin failed his hearing test from birth, his hearing didn't develop until he was a month old. Riggin also suffered from Jaundice for the first 3wks of life and was home on a billyblanket for that time.

Riggin led a pretty healthy beginning, then at 6months old, he started having feeding issues, he was starving but it was like he couldn't get enough. Riggin suffered from severe ear infections starting at a month old and still has them today even with tubes. Riggin suffered from chronic constipation from day one and is still fighting that today as well, so severe that his bowels don’t work with out medicine. Riggin also has a sacral Dimple, and has no thethering of the spinal cord. Riggin didn't crawl like normal babies and become concerned when he just used his arms to pull his leg's across the floor, we didn't know if he would walk, then one day he just did. Then around 7months old, Riggin stopped eating, he would eat only small amounts and would breast feed, but wouldn't intact enough to keep him from being dehydrated. Riggin fell off the growth charts between 4 to 6 months old. Riggin has delayed bone age of that of a 6/9 month old infant, this was done when Riggin was a 18months old, he also has many other symptoms which I have listed below.

1.sparse hair growth
2.curved fifth fingers
3.webbed toe's between 2/3
4.low set ear's
5. broad forehead and nose
6.hearing frequency problem
7. delay in speech
8.some what squinty eye's
9. Chronic severe constipation
10.severe delayed stomach emptying
11.intestines don’t digest very well
12. reflux
13.iron deficiency Anemia
14. developmental delays
15. Chronic ear infections
16. Chronic infections, colds/ flus
17. severely unexplained high fevers for the first 2yrs of life
18. unexplained fevers from 99.9 to 100.3 for the past 5 months
19. compromised immunity
20. in ability to swallow textured foods
21. deformity on head and between eye's, puffy knot like ( with lots of scar tissue on skull)
22.sacral dimple
23. complaints of pain in leg's and feet
24. inability to gain and retain weight
25. short statue
26. Chronic nausea

Riggin has seen doctors from OU Children's in Ok, to Denver Children's in Aurora Co, to Primary Children's in Ut. Riggin was diagnosed with FG Syndrome on July 30th, 2008 by Dr. Opitz at the University of Utah. Up to date there isn't a whole lot known on this syndrome and we are still learning.

Riggin eats through a tube in his belly that was placed on Sept 28th, 2006, today Riggin is not able to eat by mouth other then liquids, however Riggin's intake is so low that he suffers from dehydration. Riggin's illness has slown him down a little , but not enough to get him down, Riggin runs and plays just like any normal child, the only difference is Riggin is sick and his illness wont go away.

Riggin can't talk, so I've taught him sign language, Riggin's speech is severely delayed and as a result his frustration is high with not being able to communicate. Today Riggin knows approximately 100 signs.

Riggin receives services at home for SP, OT and PT, were still searching for a sign language interpreter to offer services to Riggin.

What we do know is that after 3yrs of searching and no answers it was a shock to get the news that Riggin is not the only one affected by this syndrome, it's believed that I am a carrier of FG Syndrome and that my other boys may as well have this rare syndrome, each child having it's own form of the disease.

There is no cure and no prognosis to this date, but I have my faith and my ambition to help find a cure to make my sweet baby Riggin healthy.

As a carrier of FG syndrome,it is believed that carriers are prone to having autoimmune diseases such as lupus, and kidney issues, which I have for years but never knew why my kidney was so bad, as each day goes on and we find more about this, all the pieces to the puzzle seem to fit.

However now that we know what it is, the name of the syndrome, it still is frustrating and the unknown still lingers in my mind, cause I still dont know the answers to all of the questions and yet Riggin still smiles and warms my heart and reminds me that every day is so precious and that sometimes not knowing may not be that bad.