Elijah’s Bone Marrow Transplant
Donation protected
You have walked with the Patino family as they have dealt with years of health questions for Elijah, age 8. And we need you again.
After six long years of not knowing what was wrong with Elijah and not knowing if things would get worse and life-threatening due to his condition, the Patino's finally received an answer three years ago and learned Elijah had a newly discovered autoimmune disorder. At this time, Elijah and mom (Ami) are the only two people in the world diagnosed with CD40LG duplication-associated autoimmune disease. Miraculously mom is not affected, but unfortunately, Elijah is. For the last three years, they thought they were on the right path but because he is the first with the condition they always knew that things could change for him. And so here we are, Elijah is unfortunately no longer responding to the treatment that has kept him well for the last three years. Elijah’s T-cell counts continue to drop and are inching closer to the point that an opportunistic infection could be fatal. Doctors are gravely concerned if they don’t act now things can take a turn for the worse, and the unthinkable could happen. Their last resort is for Elijah to undergo an urgent bone marrow transplant to save his life. They are incredibly thankful that they have found a 100% match for him for the transplant and believe that this is further evidence that God is in control. God willing he will begin the transplant procedure at the end of April.
The road will be long and difficult for Elijah, who has been through so much already, and the Patino family. The first ten days will consist of chemotherapy and various other drugs to prepare his body to accept the new marrow. Then we wait and pray that all goes well, that no infections complicate matters, and that the new marrow is accepted by his body quickly. Best case he will be at Philadelphia Children's Hospital for 90 days. He would then be released home, but still under strict isolation until he is finally cleared; approximately 8 to 12 months later barring any complications. The family is anxious but optimistic and excited at the fact that this bone marrow transplant can be a cure for his one of a kind disorder and ultimately save his life.
To further add to this trying time, the Patino family will be mostly apart. Mom will be primarily tending to Elijah, and Dad (Rich) will be taking care of Mya, Elijah’s big sister age 13. Some of the practical hardships they will endure are medical expenses, some of which they already have and those that will be incurred. Insurance will cover a good portion. However, not all costs are covered. Furthermore, they will need to bear a significant cost for travel to and from Philadelphia, i.e., hotel (if Ronald McDonald House is not available), food, gas, tolls. And they plan on counseling for the family, especially for Elijah's sister Mya. Mom will be receiving family leave, six weeks partially paid, and six unpaid.
As you can imagine this is a tough time for the Patino family, who will not have a sense of normalcy for quite a while. Their focus is to make sure Elijah has the best medical care possible. As Rich and Ami say, "They will fight for Eli as a family! And Patino's don't quit, we stand strong on a foundation that is Christ!"
We know that God makes the impossible possible, so we are hopeful.
Thank you so much for your help.
Psalm 30:2
O Lord my God, I cried to you for help,
and you have healed me.
Psalm 121
121 I lift up my eyes to the hills.
From where does my help come?
2 My help comes from the Lord,
For background information on Elijah's story:
North Jersey family, CHOP doctor discuss journey to discover boy's rare disease on 'Today' show
CHOP Immunologist, Patient and Family Featured on Megyn Kelly TODAY
CHOP Facebook Story on Elijah
After six long years of not knowing what was wrong with Elijah and not knowing if things would get worse and life-threatening due to his condition, the Patino's finally received an answer three years ago and learned Elijah had a newly discovered autoimmune disorder. At this time, Elijah and mom (Ami) are the only two people in the world diagnosed with CD40LG duplication-associated autoimmune disease. Miraculously mom is not affected, but unfortunately, Elijah is. For the last three years, they thought they were on the right path but because he is the first with the condition they always knew that things could change for him. And so here we are, Elijah is unfortunately no longer responding to the treatment that has kept him well for the last three years. Elijah’s T-cell counts continue to drop and are inching closer to the point that an opportunistic infection could be fatal. Doctors are gravely concerned if they don’t act now things can take a turn for the worse, and the unthinkable could happen. Their last resort is for Elijah to undergo an urgent bone marrow transplant to save his life. They are incredibly thankful that they have found a 100% match for him for the transplant and believe that this is further evidence that God is in control. God willing he will begin the transplant procedure at the end of April.
The road will be long and difficult for Elijah, who has been through so much already, and the Patino family. The first ten days will consist of chemotherapy and various other drugs to prepare his body to accept the new marrow. Then we wait and pray that all goes well, that no infections complicate matters, and that the new marrow is accepted by his body quickly. Best case he will be at Philadelphia Children's Hospital for 90 days. He would then be released home, but still under strict isolation until he is finally cleared; approximately 8 to 12 months later barring any complications. The family is anxious but optimistic and excited at the fact that this bone marrow transplant can be a cure for his one of a kind disorder and ultimately save his life.
To further add to this trying time, the Patino family will be mostly apart. Mom will be primarily tending to Elijah, and Dad (Rich) will be taking care of Mya, Elijah’s big sister age 13. Some of the practical hardships they will endure are medical expenses, some of which they already have and those that will be incurred. Insurance will cover a good portion. However, not all costs are covered. Furthermore, they will need to bear a significant cost for travel to and from Philadelphia, i.e., hotel (if Ronald McDonald House is not available), food, gas, tolls. And they plan on counseling for the family, especially for Elijah's sister Mya. Mom will be receiving family leave, six weeks partially paid, and six unpaid.
As you can imagine this is a tough time for the Patino family, who will not have a sense of normalcy for quite a while. Their focus is to make sure Elijah has the best medical care possible. As Rich and Ami say, "They will fight for Eli as a family! And Patino's don't quit, we stand strong on a foundation that is Christ!"
We know that God makes the impossible possible, so we are hopeful.
Thank you so much for your help.
Psalm 30:2
O Lord my God, I cried to you for help,
and you have healed me.
Psalm 121
121 I lift up my eyes to the hills.
From where does my help come?
2 My help comes from the Lord,
For background information on Elijah's story:
North Jersey family, CHOP doctor discuss journey to discover boy's rare disease on 'Today' show
CHOP Immunologist, Patient and Family Featured on Megyn Kelly TODAY
CHOP Facebook Story on Elijah
Organizer and beneficiary
Jennifer Terhune Taylor
Organizer
Somerset, NJ
Richard Patino
Beneficiary
