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We recently awarded four warrior families with the Mickie’s Miracles H.O.P.E. Covid-19 Micro-Grant. This blog series will feature each of their stories as written by their loving, resilient Warrior Mamas.

Our first entry highlights Warrior Mama Priscilla Perez’s journey with her daughter, Amaya.

Amaya’s story.

Amaya Grace Deleon was born on December 24, 2018. A healthy, sweet, and beautiful baby girl. From the start, she was a very calm and super happy baby (with some dimples that will melt your heart & man does she love to sing we call her Mariah Carey because she hits the high notes??). This girl was sleeping through the whole night at one month. That was a big deal for us! Rolling over and almost sitting up on her own at five months.

On June 9th Amaya had her first tonic seizure. I have three daughters and I have never witnessed a seizure besides what you see on t.v or movies. I was completely terrified. We were admitted into the hospital for a couple of days were they ran a few tests. They did bloodwork, EEG, ct scan, and then decided to do an MRI. Everything came back normal. We thought this was going to be a one-time thing that we’d put behind us. Boy was I wrong!

Two weeks later Amaya did some weird movement but it happened so quickly I wasn’t sure what it was. The next day she did it again and at that point, I knew something was wrong. She went into a blank stare and it was as if she was in a daze. Her leg and arm started twitching like her body and face was having a spasm. I called the on-call neurologist and explained to them what I was witnessing. She told us to pack a bag and head to the hospital. We arrived showed the E.R doctor the video we had and he stated he’s not convinced that she is having seizures. He told us more than likely we were going home.

The neurologist decided to keep us and do a 24 hour EEG, and Mya did nothing. I showed several neurologists the video and they were convinced they weren’t seizures but decided to extend the EEG to 48 hours and still nothing. The doctor decided it was time to discharge us. I told him she is clearly doing something that’s not normal so if it’s not a seizure let’s figure out what it is. I informed him that I think her being tired is a trigger so he said ok we’ll keep you another day and really wear her out. Absolutely no naps! This was very difficult but I made sure she stayed awake. My poor baby kept nodding off. Well, that sure did the trick because she had two just a few hours apart. I called the nurses in because at this point I felt crazy and I wanted them to see what I was seeing.

The following day a new doctor came in at 7:00 in the morning and explained that she was going to be taking over Amaya’s care. She is an epilepsy specialist and after reviewing Footage and EEG results they had answers! She was diagnosed Amaya with Infantile spasms. A rare “catastrophic” form of epilepsy in children which we needed to come at aggressively to stop the seizures because every time she was having a spasm there is a risk of it causing damage to her brain.  The doctor informed us they would be starting her on ACTH (a steroid injection). They were throwing so much information my way and I was still trying to process it all. An hour later a nurse came in to teach me how to administer the steroid injection because I would be giving it to her daily at home for 6 weeks.

This literally broke my heart! The hardest thing ever! It gave me anxiety! She’s my baby! I eventually became a PRO even though my heart couldn’t take it. The steroids however gave me a different baby. She began eating more than I could keep up with, NO more smiles, and sometimes she would even grunt like she was angry. This girl was going through diapers like crazy and went from wearing 6 months to 18 months. She was no longer sleeping at night and no longer hitting milestones. Sadly this form of treatment didn’t help.

We began Sabril and added in Onfi a few weeks later. That was the right combination meds to stop spasms for Amaya. She went from having 2-6 seizures a day to 8 weeks seizure freedom. Unfortunately, her Tonic seizures are back and she’s now having one every other day.

On August 1st, 2019 We received a call from Amaya’s Neurologist with some life-altering news. That call will stay with me FOREVER! Hearing her voice I instantly knew they found something wrong with my baby. My Amaya Grace Deleon was being diagnosed with a rare incurable genetic disease. I mean I was relieved having answers because I know there are families that are still trying to find a diagnosis but it still hurt. Hearing she may never walk or talk was heartbreaking. They are still learning about this disorder but every kiddo is different and will write their own story. So we have no limits to

Amaya is back to her happy, playful self again and she’s now hitting milestones. She can roll over again and sit independently. She’s currently in occupational, physical, feeding, and Vision therapy. She now has CVI (Cortical vision impairment), and had to have surgery to correct her eyes from crossing which began when seizures began.

Right now our lives have been centered around our precious little girl, but we are so happy and honored to be her parents. She is the light of our lives and I am always going to fight to give her the best quality of life. She is so strong and has made us more united than ever. We have so much faith and hope for our sweet girl. I know we still have a long journey ahead of us but I’m excited to witness Amaya’s story.

“The will of God will never take you where the grace of God will not protect you.”

This is Amaya’s story. I know it’s long so below I have a somewhat shorter version. Feel free to remove any details, as you can see I’m big on details.  ?

Shorter version.

Amaya Grace Deleon was born on December 24, 2018. A healthy, sweet, and beautiful baby girl. From the start, she was a very calm and super happy baby. She was rolling over, sleeping through the night, and sitting with a little help.

On June 9th Amaya had her first tonic seizure. I have three daughters and I have never witnessed a seizure besides what you see on t.v or movies. I was completely terrified. We were admitted into the hospital for a couple of days were they ran a few tests. They did bloodwork, EEG, ct scan, and then decided to do an MRI. Everything came back normal. We thought this was going to be a one-time thing that we’d put behind us. Boy was I wrong!

Two weeks later she started doing some weird movement. We were admitted to the hospital for a week. After a few days, they finally had answers! Amaya was being diagnosed with infantile spasms. A rare “catastrophic” form of epilepsy in children which we needed to come at aggressively to stop the seizures because every time she was having a spasm there is a risk of it causing damage to her brain. We went through several medications before we found the right combo for Amaya. Spasms have stopped but she’s still having tonic seizures. She went from having 2-6 seizures a day to now every other day. She’s currently in occupational, physical, feeding, and vision therapy.

Right now our lives have been centered around our precious little girl, but we are so happy and honored to be her parents. She is the light of our lives and I am always going to fight to give her the best quality of life. She is so strong and has made us more united than ever. We have so much faith and hope for our sweet girl. I know we still have a long journey ahead of us but I’m excited to witness Amaya’s story.

“The will of God will never take you where the grace of God will not protect you.”

 

 

Our next recipient of the Mickie’s Miracles H.O.P.E. Covid-19 Micro-Grant is Warrior Kinsley and Warrior Mama Jasmin.

 

 

Kinsley’s Journey…

 

 

 

My name is Jasmin Spears and I am a married mother of two beautiful little girls, Londyn and Kinsley. London is five years old and Kinsley is just seven months new. On Monday, December 3rd of last year Kinsley was taken to her pediatrician and received immunization shots according to schedule. We expected her to be a little fussy for a few days, but her uneasiness lasted for more than a week and the longer it lasted the worse it became. It had progressed to the point where she would cry for hours at a time until she seemed to exhaust herself and would go to sleep. The following Friday, the 7th, my husband and I took Kinsley to the Immediate Care where she was examined, and we were told that, “She looks great and is just fussy from the shots and teething.”

 

That Saturday while I was at work my mother-in-law called me to say that Kinsley had been making a strange type of motion and to ask if I had noticed her doing it recently. I replied in the negative and asked her to call me back if it persisted. Monday evening, the 11th, I first witnessed Kinsley making the strange motions my mother-in-law had called me about. To me they seemed not only strange but painful. I ask my husband to recorded Kinsley having an ‘episode’ on my cell phone. I contacted her doctor and explained to him what I had witnessed. He asked that I send him the video and after seeing it he said that it looked to him to be something called “Moro Reflux” and there was nothing to worry about. My husband and I googled Moro Reflux after ending our call with Kinsley’s doctor and noticed that the movements were very similar but not the same.

 

While dropping Kinsley off with my mother-in-law on Tuesday, the 12th, Kinsley began to make the motions repeatedly every couple of seconds in clusters. At that point I knew something was wrong and that it was time to get her to the nearest ER. My mother-in-law and I dropped Londyn off at school and headed to Edwards Hospital in Naperville. We were seen by Stephen Crotty the pediatric ER doctor. Dr. Crotty asked to see the video and after watching it said it could be spasms, so he wanted to start an IV and get an MRI plus a 24 EEG. Now I know it is serious because they came and put an IV in my baby’s tiny arm. I just remember looking at my mother-in-law and starting to cry, just the thought of her tiny body being stuck and in the hospital was too much for me to handle. I immediately informed my husband of the situation and from there everything went really quickly.

 

They started the IV, we got admitted, we then started seeing Dr. Taaha Shakir who then explained to us that Kinsley could possibly be having spasms and that she was going to begin 24 hour surveillance EEG. Dr. Shakir told us that anytime we saw Kinsley doing the jerking motion to press the button on the EEG. My husband and I did press the button and we noticed big movement on the EEG when that happened, but we did not know what that meant until the next morning when neurologist, Dr. M Ammar Katerji, came in and confirmed that it was infantile spasms due to what he had read off of Kinsley’s EEG. Dr. Katerji then told us that we would be transferred to a children’s hospital who has ACTH which is specifically used to treat infantile spasms. On Thursday, December 13th at 3pm Kinsley was transported by ambulance to Lutheran General Children’s Hospital in Park Ridge.

 

When we arrived at Lutheran General on Thursday, December 13th  while getting her vitals I was talking with Dr. Luda Sorin (neurologist) when my husband and  I noticed that Kinsley started doing the cry that she does while she is having her spasms.  I stopped mid-sentence to inform the doctors and nurses that she was having spasms. The doctors and nurses stopped what they were doing to get their own view of what her spasms looked like. They also timed them.  After that we saw multiple doctors and they put an IV with anti-seizure meds in it (hoping it helped with the spasms). The next day they began drawing blood and also did an echo of her heart. That Saturday, the 15th, she started ACTH. We met Dr. Sorin’s partner, Dr. Farha Tokarz (nero), who was very upset that Kinsley’s IV was removed and that she was not getting the phenobarbital. Dr. Tokarz also informed my husband and I that once Kinsley goes home that she will be taking three medicines –  ACTH, meds for acid reflux and phenobarbital and that she will need to follow up with an EEG two weeks after being released from the hospital.

 

On Sunday, December 16th, we were informed that we were just waiting on the insurance to approve the ACTH. Monday, nero told us that while Kinsley was taking ACTH that a nurse would be coming to the house twice a week to check weight, blood pressure, blood in stool and glucose in urine. We got word that the insurance approved the ACTH so we were now waiting for it to be shipped and brought to the hospital so that the pharmacist could check that we have all the right supplies so Kinsley could go home. Wednesday, the meds arrive and the pharmacist went over everything. We then get the approval to take Kinsley home with us. Kinsley was doing good on the shots, she went from getting them twice a day to only having to take it once a day.

 

My mother-in-law watches Kinsley while I am at work, she sent me a video on Friday, January 11th showing Kinsley looking to her left side and doing an eye rolling movement with  her left arm, in particular,  going up. I informed her neurologist staff of what I was experiencing and they told me that  Dr. Sorin  would call me back right away.  When she did not return my call that day after multiple tries I called Kinsley’s pediatrician and he told me to take her to an ER and get her evaluated.  I took her to the ER and they informed that everything looks normal and to follow up with her neurologist on Monday. I called on Monday the 14th her staff told me that she would be calling me back and after multiple calls she still did not call me back. I called again on Tuesday and it was then that her staff informed me that she was out and that she was ill the past couple of days. I did speak with her on the 15th via telephone and she said what I described to her sounds like Kinsley is having focal seizures and asked me if I want her to prescribe Kinsley something for them until she can see her and I told her no I would prefer for her to see her first, she told me to come in the following day, the 16th and she would see her then.

 

I started looking up infantile spasms support groups while at work and I came across the Child Neurology Foundation and got in contact with a woman named Kathy Leavens who is a support specialist that directed me to the Mickies Miracles website. I started going thru the site and reading the testimonies, and I was very curious to know more so I put my information into the contact page. I received an email back stating that someone will contact me. Within an hour Kristie Griess personally contacted me and asked me to tell her more about Kinsley’s story. As a mother the fact that I received a call the same day, within an hour was a blessing to me, I felt so relieved. Then she asked me to tell her about Kinsley’s story by that time I put my husband on the phone and she asked us would we like a second opinion and I said yes, we would love that. She asked us how close we lived to Luries Childrens Hospital and I told her about an hour away. She said Dr. Millichap is one of the best and she knows him personally and that with my consent she would tell him about Kinsley and have him call me I said that would be great. About 30 mins later Dr. Millichap called me and told me that he spoke with Kristie and asked if I would like for him to take a look at Kinsley and I said yes. My husband and I ended up taking Kinsley down there that same night on the 15th  and they ran test that the other hospital did not, they were just really on top of things. It was such a great team of people, we also saw Dr. Millichap and he talked to us about the Ketogeneic diet after she finished the ACTH. My husband and I discussed it and decided to go with the Keto diet as the next treatment. January 24, 2019 was Kinsley’s last day on ACTH, she recently had her follow up EEG on February 6th where I was told her EEG shows no more Spasms but has some abnormal spikes which will hopefully be treated by the Keto diet which will start later this month.

 

That is Kinsley’s journey thus far. Thank you for letting us share it with you. Thank you for your prayers and support.

 

 

Warrior Mama Brittany and Warrior Baby Amaree

 

Our next recipient of the Mickie’s Miracles H.O.P.E. Covid-19 Micro-Grant is Warrior Amaree and Warrior Mama Brittany. Here is their story:

 

I like to call myself a vampire because I haven’t had a decent rest in over eight years. At night I hover over my daughter to see if she is breathing, in pain, or possibly mumble the three words I have longed to hear “I Love You.”

Amaree emerged into this world, screaming to announce her presence, and I knew from then I had this unbreakable bond, she was just like me….. Loud lol. She was two months old when she had her first seizure. Her body movements looked as though she was shocked by lightning, and her screams of agony and pain made your bones cringe. What did I do to my little girl? Did I have her too close to the tv? Did she despise my singing? What did I do wrong? All I could think of is that I had failed as they ripped her from my arms. The Doctor sat me down and told me she had “Infantile Spasms,” this is a catastrophic version of seizures, the worst kind. We stayed in the hospital on and off for six months after that day. They ran test after test, we saw specialist after specialist, and she took medicine after medicine. It’s the feeling of failure that runs through your blood because you have this innocent baby that you can’t help. I prayed day after day to take the pain that she was feeling. This pain described to me as having full body Charlie horse that lasted minutes at a time, and she had hundreds a day. As a parent, you feel hopeless and a failure. What did I do wrong? Did I eat something bad during pregnancy? Did I not burp her, right? While every question circles your mind, the main question that you seem to focus on is Why Me? As doctors linger in the background and whisper “, she’s going to die.” It just hits your soul.  I had every intention of being a good parent, loving my child, and getting the best for her. But God, why me? Why are bad people blessed to have healthy functioning children, but here I am crying every night wishing my daughter could hold her head up, sit up and mumble those three words I have longed to hear. Sitting in a hospital room and having to listen to your child will not make it to see her first birthday, after you prayed for love, for that space to be filled and having that space continue to be voided by a Doctor’s speculations. It took until she was three before she was diagnosed with Lennox Gastaut Syndrome. And having a name for it seemed a bit comforting. After years of fighting this condition on the front line, I woke up one day, and all the questions that circulated through my head for years had been answered. And that main question that I couldn’t answer “Why me” had an answer. WHY NOT ME? Although my daughter cannot sit or stand, she is still here with me. And today, I fight for her. My daughter doesn’t have a voice, but I do. Although she may not know who I am or can’t verbalize that she may love me, seeing her brown eyes every day is my inspiration to fight for her and fight for myself. Doctors gave up hope for her and told me everything she wouldn’t do, but slowly every day, she does the impossible and does the main thing they said she wouldn’t do, and that’s LIVE. My daughters’ eyes are brown, and every day that I look at them, I get inspiration and motivation. LGS is far from easy, but every day I have with her is spent fighting for her, but we do it together, and that’s all that matters!

 

Our final recipient of the Mickie’s Miracles H.O.P.E. Covid-19 Micro-Grant is Warrior Baby Melody and Warrior Mama Chelsea. Here is their story:

Melody was only 3 months old when she had her first seizure. At the time, Melody had no known health issues. Following her initial seizures Melody was hospitalized at the PICU at LPCH for further monitoring and testing. After Melody’s first MRI her family learned that she had several minor brain malformations, that had been undetected in-utero, and she was diagnosed with Epilepsy. It was a couple weeks later that Melody began to have new seizures. These new seizures started very subtle, appearing in quick twitches or jerks, always in a clustered time frame.  Unable to find a medication to stop the seizures, Melody was having up to 500 seizures a day. Sweet Melody endured this for 8 weeks until a medication finally worked for her. Melody is a kind, funny soul, who leaves a lasting impression on everyone she comes into contact with. Luckily, Melody loves music. Her favorite place is sitting next to Dad while he serenades her with his guitar. To know her, is to love her.

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