SIR strong fighting SCID

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On February 12th, 2017 our sweet boy was born… Sebastian Isaac Romero. Born at 2:59 p.m., weighing 8 lbs 9 oz, 20 inches long with a full head of hair, super cuddly and cute and a day earlier than we had planned. During my pregnancy everything was normal, or at least most of it. I had to be put on bedrest because this kiddo wanted to come early. Let’s just say Sebastian has been on his own schedule the entire time. We went home as normal after 2 days - with a healthy looking baby.

Then the news came… on February 21st, 2017 we got the call, a call no parent wants to get. Our pediatrician called and left me a message because I was feeding Sebastian and he then tried my husband. Emil later called me and asked me if I had spoken to the doctor and I said no, why? So he told me to sit down because he had some bad news. They had found abnormalities in his immune system when they did the Newborn screening. I broke down! I cried relentlessly for a few hours.
We were scheduled to go see an Immunologist at Texas Children’s on Thursday, February 23rd, 2017. There the doctor went over the three possible results from the tests she was going to run on him.

1. False Positive- we would never see her again
2. Very minimal level of SCID- which requires only medicines.
3. SCID- No immune system at all.

That Thursday was the longest day of our lives. The wait was horrible and we prayed without ceasing. In the midst of tears, we begged God to give us a negative result which would mean that our baby was healthy. That was not to be the case At about 5.30 that evening, the doctor called us back with the devastating news that he is a SCID baby and we have to start moving quickly to get a Bone Marrow Transplant. They said he only had 50 good TCells out of a possible 1500 he should have at his age.

So our journey begins…..



What is SCID?
Severe combined immunodeficiency, also known as the bubble baby disease, is the result of an immune system so highly compromised that it is considered almost absent. This means that until he is cured, Sebastian will be in a sterile, isolated environment with me. (Mom). It also means that Abraham and Kayla, his brother and sister won’t be able to see him either.

The only treatment for SCID is a Bone Marrow Transplant and we are hoping that one of his siblings (Abraham or Kayla) will be a 100% match so that they can be the donors and his best chance. If there is no match then we have to go to the Bone Marrow Bank and that would take a little bit of time for them to find a match.

On Tuesday, March 7th, 2017- we are scheduled for another appointment to meet with the Bone Marrow Transplant Surgeon and to get the kids tested to check if they are a match.
The transplant process will be a long and high risk one. The doctors say that with the transplant Sebastian has a better chance of living a healthy and normal life. They also said that the success rate of the bone marrow transplant before the third month of life of a baby with SCID is 90% successful. So it’s a race right now. The doctors say if there is a match, then within 5 weeks we should be getting admitted to the hospital to start CHEMO to kill the cells he has and make room for the transplant. During the time that Sebastian is in the hospital, I will have to be there with him permanently in isolation. Visitors are not allowed because of the delicate condition of babies with SCID. I am currently on maternity leave but once that ends on March 27th, I will be losing any sort of income. I am currently the main breadwinner in our house so this will put a huge dent in our finances. We are doing everything possible to prepare for this, I am planning on having a few bake sales, and will depend on my Tupperware side business to help us a little, but it surely won’t be enough. The estimated time they expect this entire ordeal to last is about 3 months (counting this week). Praying there are no complications of course. After those 3 months Sebastian will be going in for some weekly and monthly checks to see how he’s doing, and that can last for more than a year. Emil will have to miss some work to be there with me and travelling back and forth between the hospital and home because our other two kids will need one of us to be there for them as well.
It will be a long, difficult road but we are trusting that God can heal our Sebastian at any time.
We are asking for any sort of help you can give us. We have a lot of friends and family praying with us and offering to spend time with our kids as to provide them with some sort of entertainment while mommy and daddy help Sebastian. I spoke with my HR department today and basically I am allowed to change from FMLA to Medical leave when FMLA ends, but of course all unpaid. We need your help. if God puts it in your heart to help, thank you! If you can only pray with us… then that in itself is a great blessing. The more prayer warriors we can have, the better! We are in it to win it! #SebastianStrong We will beat SCID and we will see Sebastian grow up to be a great man of God with a powerful Testimony!

The total cost of the treatment is likely to be more than a  frightening $1,000,000 and while we are insured, it will not cover a lot of it. What will the funds be used for? Every penny will be used to help us cover medical bills and cost of living in the hospital and paying off monthly expenses that can’t or won’t be covered with Emil’s pay check alone. Unfortunately these things are not things you plan to happen… we were preparing to have Sebastian home and able to enjoy him. Emil and I have always been a team and will continue to be one but we need a village to help us at this time.
I am not one to ever ask for anything for myself, I am more of a giver and like to do stuff for others, and I can easily ask for donations for others, but I find myself in this situation asking you for help for us now. So anything helps.

God bless you many times over! We love each of you! And we will overcome this hurdle. Stay tuned for updates… #SIRstrong