HELP TRUETT GET DIAGNOSIS/TREATMENT
Truett's family is anticipating many expenses:
1) Second Opinion at CHOP and John Hopkins Hospital: Truett's primary insuance has informed the family that both hospitals are in network. It is not in-network for his secondary insuarnce.
2) Transporting Truett: Primary insurance has stated that it will not pay for the medical plane Truett needs ($32,900 round trip) unless it deems it "Medically Necessary." Primary insurance has stated that it will not make this determination until AFTER the flight is made. The family has decided that they will take Truett to see these amazing doctors whether or not insurance will pay for it. This is Truett's one shot. When the best doctors in the country say they will see your critically ill child--you go. You don't second guess it. We are working with a wonderful case manager to try to impress upon insurance how important this flight and trip are for Truett. Due to Truett's oxygen requirement, he cannot fly on a commericial airline nor a chartered plane. He requires a medical plane. Truett's base line oxygen requirement (3 liters) also prevents him from traveling on Amtrak.
3)Lodging: Truett's family will need to reserve a hotel for themselvses, Truett and 2 nurses (as Truett needs around the clock care) during this week, which Truett's family will pay out of pocket for. Medicaid may pay a stipend of $53 a day to help if they deem this trip "medically necessary." The family has looked into the Ronald McDonald House, however they cannot guarantee whether they will have a room for the family and nurses. This is troubling as Truett's medical supply company will need to deliver oxygen and medical supplies to the room prior to or at his arrival. Changing the location if RMH is not available could be difficult.
4) Vehicle: Truett's family will need to rent a large vehicle to transport Truett's equipment, him, his parents and the nurses around. (To and from the airport, to and from the hospital as he will be treated as out-patient, and to and from John Hopkins Hospital to CHOP for another opinion).
Truett was born a healthy, full term baby. At 2 months of age, he and his family caught a cold that resulted in him being hospitalized. A month into his hospital stay he contracted a blood infection from his pic line and shortly thereafter stopped moving his legs, diaphragm (for breathing) and arms. He now has a trach and ventilator to breathe (life support), a g-tube to feed, and barely moves his limbs. Doctors at 4 hospitals have tested him for every commerically known genetic disease. Baylor University performed a full gene exome test of all of his DNA and could not find a reason in his genetics for this illness. They are unsure of why Truett is like this. He appears to have a neuromuscular disease that has caused his axon nerves to stop working. It could be genetic, or acquired from the entero/rhino virus he had or the sepsis he got from the hospital stay.
The good news is Truett is starting to move his fingers and arms, and he is starting to initate breaths on his own (1 every 20 seconds). His parents are doing everything they can to help him recover and to find a diagnosis. It is their goal to help him recover, and to one day start an organization or hospital to help other undiagnosed children and families.
Please help us diagnose and heal Truett. You can follow our story on Truett's community facebook page, "Truett's Voice."
Anyways, the supply companies rent oxygen by the month (not days or a week like we need). And, they rent it per state. Since we will be in two states over one week, we will need to pay out of pocket for oxygen for one month in Pennsylvania and oxygen for one month in Maryland.
Our local supply company is wonderful and is looking into this for us. They are trying to find a national supply company that will only make us purchase it for one month, since they operate in both states. The cost is unknown yet, but if we need to buy it for a month in two different states it will be at least $500. I'll keep you updated as we learn more.
Thank you for giving so that Truett has this once in a lifetime opportunity. Our family is forever grateful. When the dust settles, we plan to advocate for undiagnosed children and their families. God Bless you all!
Thurston, Priscilla, Savannah and Truett
God bless you all! Thank you for helping us give Truett this chance at a diagnosis and hopefully treatment.
The Rosenlund Family
I first became aware of Truett's condition since just before his trip to John Hopkins, and i am hooked, totally. If anyone defines what it means to be a fighter,and do it all with a smile it is Truett. I cannot think of a more deserving kid for a miracle. I know this campaign's orignal purpose has been reached, but I also know there is so many other expenses over and above the original listed here, and Truett's family has tried to meet them gladly, anything they can to help him find a cure for him, but there is still no diagnosis although there are still solid options still to explore, but they cost money and are out of the reach of insurance to pay for them, and several of them hold promise, and have helped kids in similar circumstances to little Truett, including some that require Truett to once again travel to another city. If you are like me, and think Truett deserves a chance to be a normal kid, and live a long life, please think about still donating. I think his family is admirable in their being too humble to keep asking for help, but I truely think there are little causes that are more worth it then this one. I would hate to think Truett cure is just a few thousand dollars out of reach, and so I just wanted to remind people Truett's fight is still on going, and it could literally be that a cure is just around the corner, one trip to a specialist away from Truett finding what is going on, and from there coming to a full recovery. Please think about contiuing to support his family, and especailly Truett's big sister who has been there for him from day one, and has been his best friends to him. I can think of less then a handful of families as equally deserving as Truett's. At least a prayer or two might go along way...! A fighter who does it all with a smile and giggle has my full admiration. Hope it is something that rings true to you as well. Namaste.
Have the doctors eliminated Guillain-Barré syndrome as the source of Truett's condition? I had a similar experience with the loss of use of arms and legs (a week after having a cold and flu). Fortunately, one of the attending doctors diagnose my illness correctly and was able to recommend the right treatment. It took 4 months of physical therapy after treatment to have "normal" use of my extremities again. I hope the doctors are able to diagnose Truett's condition and find a cure for him.
I don't know if this helps or not but I here Delta will let you fly with a vent and oxygen if you bring your own oxygen. My daughter needs to go to Chop also and she is like your son on 2 liters and vented. Its so hard. Good luck to you all. God Bless you.
Hi. We have a private support group for parents going thru this mystery illness with our children. My daughter was diagnosed with the enterovirus in October and became paralyzed in her right leg amount other things. My husband and I have found great support with this group. here is a link to our group and also a link to my daughter bailey 's story . I am so happy Truett made it to philly!! Support group https://m.facebook.com/groups/601223099978283?ref=bookmark Bailey's story http://www.caringbridge.org/visit/baileysheehan
My son,has this Lucianolivera.weebly.com We have a facebook support group. Parents of children with acute flaccid paralysis. Come join other families