This is John Francis and his little friend, Greta. You have never seen a child light up more than John Francis when there is a baby nearby. With such a large capacity to love, you might never know that he's working with only half a heart.
John Francis is a newly minted five-year-old and, in his five years, his little heart has bravely faced several open-heart surgeries and other complicated heart procedures. While still in utero, John Francis' parents, Hemma and John, learned at the 20-week ultrasound that the left side of John Francis' heart was severely underdeveloped, a rare condition called Hypoplastic Left Heart Syndrome (HLHS) . Shortly after his birth, on April 16, 2014, he experienced his first of what was to hopefully be a series of 3 surgeries to essentially convert his heart to a functioning two-chamber organ, allowing deoxygenated blood to bypass the heart and go directly to the lungs. These surgeries were never meant to be a permanent fix, but a temporary opportunity to buy his little lungs more time to develop before he needed a heart transplant. Unfortunately, John Francis was only able to have the first two of the surgeries done before his heart began to decline too much to have the third surgery. He was deemed ineligible for that surgery last month and he is now awaiting a heart transplant.
How to Help the Clarks:
Of course, the road to receiving a new heart is a complicated one, full of many challenges, both medically and financially. While most of us are not able to help on the medical side, the financial aspect is one way we can help alleviate some of their burden. There are so many expenses involved beyond those that the insurance will cover. In fact, the Clarks were told by the medical staff that it would be wise to fundraise for the many unanticipated costs of this transplant journey. Here is the nutshell version of the situation they face:
*The transplant will take place in Chicago at Lurie Children's Hospital of Chicago, and they have been told to anticipate possibly up to two years away from their home. John and Hemma, while expecting this move to happen this month, did not expect that an appointment in Kansas City this past Sunday (April 28), would end up with John Francis in the ICU for his worsening heart failure. Tomorrow (May 1), John Francis and Hemma will be life-flighted to Chicago. John left this morning by a commercial flight. The process of moving away from their home in Wichita, Kansas with their family of five (John Francis has two older siblings, Antonia, age 8, and Emil, age 6) still has many loose ends to tie up.
* They have to be a short distance from the hospital. This means that they will need to find a place in the downtown area, making the cost of living much more expensive.
*The cost of living in any part of the Chicago area is much more expensive than the cost of living in Wichita. This move required Hemma to leave her job, which was an important source of income for their family. The good news is that the company John works for will relocate him to the Chicago area.
* There are many travel expenses involved for their family of five, including the travel expenses of either Jane or Uli, John and Hemma's mothers, to come and help them in caring for the needs of their family. Caring for John Francis is a full-time job, but, in addition to this, Hemma will be homeschooling his siblings in an effort to reduce illness exposure, as John Francis is extremely immunocompromised.
* There are the expenses of upkeep and mortgage payments for their home here in Wichita.
* There are a whole host of other expenses that will undoubtedly crop up, but we would also like to provide a cushion for them during this whole process.
* While there is much to be done financially for this wonderful family, they would be the first to tell you that the foundation that will support them the most is prayer. Please keep John Francis and his whole family in your prayers. Both Hemma and John have expressed how much they have been buoyed by the prayers for them. It may feel like an intangible way to support them, but please know they feel very moved by these prayers, and have the felt the many graces that they have received through them. Thank you so much in advance for keeping this beautiful family close in your prayers!
*For anyone who would like to be kept up-to-date with John Francis' care and medical journey, Hemma or John will try to keep John Francis' CaringBridge site current. (You can sign-up at that link for emails sent to your box whenever they have a chance to update the site.)
For those of you who would like to contribute monetarily, thank you so very much for your generosity! (Also, I know several people have expressed an interest in an automatic monthly deposit, which would be extremely helpful. If you are interested in this option and able to contribute in this way, we are still exploring a way that would make it easy for you to do this, but, for now, unfortunately, there is not an option through this site. The best option is to use the usual devices for reminders to come back here and do so every month.)
- The Matthews & Ignowski Families
- Phil Colarusso
Organizer and beneficiary
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