Hi. My name is Barb, aka "Nama" to my 6 grandchildren. Levi is the youngest of my grandchildren and is a sweet, lovely little soul. His mom, my daughter Julie, recently got some devastating news. Levi was diagnosed with "Severe Pulmonary Hypertension". It is very rare in children but it is serious. Over time, pulmonary hypertension can lead to problems such as heart failure, damage to the blood vessels or abnormal heart rhythms. Levi's cardiologist has advised that Levi's lung vessels are stiff (normal vessels are flexible) which means the right ventricle of the heart needs to work harder to pump blood to the lungs. This causes not only the heart to get bigger but also damages the blood vessels causing them to become scarred and makes them weak and at risk of tearing.
Pulmonary hypertension is a challenging condition to treat. Levis cardiologist is currently trying medication to lower the pressures in the Pulmonary artery to slow down the disease. The dosage and number of medications he will need has yet to be determined.
Another challenge with this condition is his body burns twice as many calories as normal because of the extra work the heart and lungs do to keep blood moving. At 9 months old Levi is only 12 lbs and needs to have numerous additional feedings (every 2 hours and thru the night) a day via a feeding tube.
My daughter Julie is a wonderful, devoted, hardworking mom. She is a single Mom with 4 children. She is a hair stylist and has worked hard to provide for her children. A year ago she purchased a home where she could live and have a home salon. Because of Levi's condition and the time it takes daily to care for him, including time spent in hospital, tube feedings, appointments etc. Julie is now unable to work and earn a income. In time she is hoping the feeding tube will allow Levi to get to a normal weight and that the cardiologist will be able to find the right combination of drugs to slow down the progression of his disease. She hopes to then return to work.
As Julie's mom I would love to be able to take away her pain, stress and financial worries so she can focus all of her energy on healing her son. Unfortunately I cannot do this on my own. This is why I need your help. I humbly ask, if you are able, please donate and share to help Julie and her family.
The site will be updated regularly with any news on changes to Levi's condition on his journey.
Money raised will be used for monthly expenses including mortgage, medications, utilities. Thank you.
**Update of Levi's condition **
Levi went thru genetic testing about 6 weeks ago to determine if he had "Noonans Syndrome ". Unfortunately Julie received results from the geneticist a couple days ago that confirmed he indeed has this Syndrome.
Noonans Syndrome is a genetic disorder that prevents normal development in various parts of the body in a wide variety of ways. These include unusual facial characteristics, short stature, heart defects (Levi's are severe), other physical problems, increased risk of childhood leukemia, and possible developmental delays.
Julie has a appointment with both the geneticist and the cardiologist on Monday so will get more information at that time. If there is any new news I will put an update on this site.
**April 18th update**
After meeting with the geneticist and doctor in that field, it was determined that a number of specialists would need to be added to Levi's medical team to support his recent "Noonans" diagnosis to insure he has all the necessary support for any challenges associated with this Syndrome going forward.
Follow up with the cardiology testing resulted in Levi's pressures in his heart showing stable but unfortunately no improvement with the current medication. Following more blood work a supporting medication will need to be introduced, as determined by his cardiologist in collaboration with the Sick Kids team of doctors in Toronto.
Let's hope the addition of this new medication will make a difference in Levi's condition.