Ellis Todd's Journey with CLOVES

Please take the time to read and share our story!

On the morning of August 9th, 2018 our lives changed forever.  

My wife, Venessa woke up and in fear and panic she woke me up and told me our soon to be son, Ellis James Todd was not moving. We quickly began to pray that everything was okay. She did everything doctors and Google told us to do to get him moving. (Shower, drink juice, lay on different sides, etc.) But still nothing. As soon as the OBGYN opened we gave them a call and they told us to come straight in.

As soon as we arrived the nurses brought us back and tried to locate the heart beat of our son. I watched as the nurse frantically moved the ultrasound machine back and forth and then rushed out. Our hearts dropped. The child my wife had been carrying for 33 and half weeks seemed to be no more. After she stepped out we began crying out to God, for our child to live. The Doctor came in and found his heartbeat and recommended us to go straight to Conway Hospital in Conway, SC to have an emergency C-Section. 

Just two weeks prior on an ultrasound the doctors noted a mass about 3 inches big located on his side and that Ellis was going to have to be delivered at the Medical University of South Carolina  (MUSC) in Charleston, SC. Not wanting to be separated from our son after birth and wanting to have the best care for my wife and him we wanted to deliver at MUSC. The doctor told us that there wasn't enough of time make the 100+ mile trip to Charleston without risking the loss of the child or my wife.  But I made the choice that we needed to deliver at MUSC rather than Conway and we rushed at speeds over 90 mph to get to Charleston; thanks to my friend Adam Sorensen.

Upon arrival my wife was rushed up stairs and within moments I was pushed out of the way and she was rushed back for an emergency C-Section. I sat in a hallway once again crying out to God for my wife and son for what seemed like forever. I was then ushered back to see my son for the first time.

My heart broke for him. The mass on his side was not 3 inches but larger than a softball. Both of his feet were clubfoot, some deformities in his left foot and his left leg appealed larger than his right.

He couldn't breathe and had to be put on a ventilator. His blood levels were low and needed an blood transfusion.

When the Vascular Malformations Doctor came in she diagnose him with a super rare disease known as CLOVES Syndrome or CS. Which is an acronym for Congenital lipomatous (fatty) overgrowth, vascular malformations, epidermal nevi and scoliosis/skeletal/spinal anomalies. 

There are about 250-500 people in the entire world with CLOVES Syndrome and this syndrome was not discovered until around 2009. It is caused by a genetic mutation in the genes.

Please read up on it at https://rarediseases.org/rare-diseases/cloves-syndrome/

After learning about CLOVES Syndrome the doctors gave us options to treat the mass on his side. And the only options that would address him at such a young age was to remove the mass. When they did a MRI on his body they found two additional masses (vascular malformations) internally. One was near his right kidney causing his right kidney to be smaller than his left and the other was above his right lung stretching up toward his trachea in his neck.

On August 16th, 2018 surgeons were able to remove the mass located on his left side. And Ellis pulled through the surgery like a champ. He started improving rapidly. Within a few days he was off of the ventilator and weened off of the pain medication. He began to eat from a bottle and seemed like a normal child.

His improvement astonished everyone who had every seen him. He look as if he was a different child. Many people were praying for him, our family and his healing and they witnessed a miracle unfold in front of their eyes. And on Thursday, September 6th. Ellis was released from the hospital with some follow up appointments to monitor his other masses and the other issues with CLOVES would be discussed at a later date.

We finally were able to be home with all of our children Emma (6), Judson (4), and Ellis (1 Month). Then the treat of Hurricane Florence was on its way.

On Thursday,  September 13 our lives changed once again. My wife was feeding Ellis and he spit up his food. She burped him and went back to try to feed him and he stopped breathing. Ellis then turned purple and went limp. She began screaming for me. Fear struck our lives once again. Our son had died in her arms. I took our son from her and preformed CPR on him. He finally let out a faint cry right before the paramedics arrived to rush him to the hospital.

He was air lifted from Conway Hospital back to MUSC. He had a collapsed left lung and fluid in his right lung. Then we got some worse news.

The Mass that was located in chest and neck had grown rapidly and was blocking his airway. Where the mass is located it is not able to be operated on to remove it. There are a few procedures that can be done to try to shrink the mass. But there currently is not a cure for CLOVES Syndrome. There are some treatments and trial programs.

He currently is back in MUSC where he will be for multiple weeks. Cloves is a life long disease. Every 3 months Ellis will have to have full body ultrasounds to make sure he is not developing any other masses.

The doctors are reaching out to Boston Children's Hospital who is the leading expert in CLOVES for consultation and at sometime plan on traveling up to Boston for them to examine him.

More than money or resources we need your prayers. We need a miracle! Pray for Ellis! Pray for my wife Venessa! Pray for our children (Emma & Judson)! Pray for me! Pray for the Medical Staff!

All funds that are raised will be used for traveling expenses, medical expenses, and day to day living expenses for our family during this difficult time.

Feel free to follow his story on Facebook (Ellis Todd's Journey): https://www.facebook.com/groups/263550270927416/

To all of the Family, Friends, and many people who have heard about our story and prayed and already supported us Thank You!

Blessings,

Travis Todd
Ellis' Father
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Organizer

Travis Todd 
Organizer
Conway, SC
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