Thank you everyone who has been so incredibly kind and supportive during what clearly has been the most stressful time in our life. We are not completely out of the woods yet and expect a long recovery, but Sarah has outpaced the doctors' expectations at every step. We expect to wake her fully from sedation in the coming week and will be sure to post a video of her awake and fully experiencing her new lungs.
We have been steadily receiving notes of encouragement for Sarah and many asking to fundraise for Sarah. Therefore we have set up this fund that will be used to cover medical costs, rehabilitation over the remainder of the year and Sarah's future.
In addition, below is the note that we wrote to close out the Change.org campaign that everyone contributed to. With over 373,000 supporters we all made a positive change for all children who may find them in our situation. Since the policy change took effect by OPTN, transplant centers across the country have followed the process that Sarah has benefited from and have been able to list their pediatric patients on the adolescent/adult transplant list based on their Lung Allocation Score. Your efforts are saving lives.
God bless you all for standing by Sarah and the other children who now will have the opportunity to live to their lives to the fullest.
Janet, Fran, Sarah, Ella, Sean and Finn MurnaghanVictory
with 373,276 supporters http://www.change.org/petitions/optn-unos-change-policy-to-allow-pediatric-transplants-of-adult-lungs-based-on-medical-necessity
To all of you who have taken up Sarah's cause and signed this petition to change the Under 12 Rule "“ thank you! Your incredible efforts have helped change policy and save lives.
On June 10, the Organ Procurement and Transplantation Network (OPTN) board unanimously passed a resolution to allow children under 12 to be considered for the adult lung transplant list on a case-by-case basis by OPTN's Lung Review Board.
Three days before, a federal judge had granted Sarah and another boy - Javier Acosta, who is also in Children's Hospital of Philadelphia with end-stage cystic fibrosis - a temporary restraining order that allowed them to be considered for an adult lung transplant based on their Lung Allocation Scores (LAS).
On June 13, we received news that adult donor lungs became available and Sarah received a lung transplant.
Sarah got lungs quickly after going to the adult list because her LAS finally mattered and she was the sickest one on the list. She had an LAS of 91 out of 100 when transplanted.
We are in the early stages of recovery and Sarah's battle has been rough, but we're continuing to fight.
As difficult as this process has been post-surgery, we appreciate that OPTN has now opened the door for other children in Sarah's unique position to become eligible for adult lung transplant.
The OPTN's decision does not mean that children under 12 will automatically go to the front of the transplant line. They will not receive special treatment, but they will now be placed on the waiting list based on the severity of their illness the same way people 12 and over are listed.
We hope Sarah's story moves people to become organ donors, because more than any ruling, it is the heroes who donate their organs that save lives.
God bless you all for standing by Sarah. Thank you to Congressman Pat Meehan, Senator Pat Toomey, Senator Bob Casey, Congressman Lou Barletta, Governor Tom Corbett and all of the other elected officials who fought to change the Under 12 Rule. To all of Sarah's supporters who signed this Change.org petition, we thank you and ask for your continued prayers in support of Sarah and all people waiting for organ transplants.
Janet, Fran, Sarah, Ella, Sean and Finn Murnaghan