Dear Friends:
I would like to take a moment of your time to tell you the story of Terran is a 7 year old and the youngest of 6 children.
Terran was born whit a rare disease called hirschsprungs disease (a portion of his intestine lacked ganglion cells it was
also found after years of suffering that Terran also suffered from Chronic intestinal pseudo obstruction his bowel just does
not work. Terran has struggled for his whole life to be a normal child. When Terran was three years old he was placed on TPN
TPN also known as total parental nutrition feed Terran via vein to help him grown but Terran did not tolerate TPN well after
two years TPN began to take a toll on Terran's fail body numerous infections treated his life and his liver was being damaged.
A multiviseral transplant was his only hope. IN march of 2002 Terran was flown by Angel flights in port Richey Florida
to Miami for a transplant evaluation. as a result Terran was placed on the national transplant waiting list
His call came on Sept 11, 2002 at 9:11 PM his day came a donor was found for him the next day he underwent the transplant
a new stomach, pancreas and small intestine. It was hoped this would help Terran get off TPN. His course has been
complicated by many problems shortly after his transplant tumors were found in terrans new bowel that forced Terran to undergo
chemotherepy for 4 months but it was successful. He also suffered Epstein barr syndrome (one of the results were the
tumors) while the chemo has been successful Terran still has many problems as a result of the transplant and other factors.
His new stomach has not worked well since transplant he has undergone surgery to attempt to correct it but that has not been
as successful as we had hoped. We may be looking at retransplant in the near future.
While Terran loves eating and for a few months was enjoying the joy of eating he is no longer allowed to eat (per doctors
orders) the food which he loves causing him massive diarrhea and caused him to become dehydrated. Forcing us to restart
iv fluids but line infections made us have to take his beloved food once again. For now Terran is not back on TPN he
is fed via a tube placed in his intestine for now if he does not eat he is OK.
Terrans condition is rare and there is n no major foundations or medical associations to provide support for\ Terran's
parents. The transplant was paid for by insurance but the family has incurred substantial expenses as a result of complications
of Terran's transplant the facility where he must go is 500 miles from his home and the parents lack reliable transportation.
He has required numerous trips from his home in port Richey just in the first year post transplant. Terran also must
take numerous medications which are not covered by insurance and must be provided by his family.
Despite his courage terrans family is confronted whit a challenge his parents can not face alone and ask for your help
and prayers to help lessen the burden his family must bear to give Terran as near a normal happy life as possible
if you can help please send a donation to
The Terran Robinstein Family Trust fund
C/O Bank of America
7419 State Road 52
Bayonet Point Fl 34667
Funds from this trust can only be used by the family for transplant related expenses.
