A New Path and a New Day

Michael’s parents have found hope in a possible stem cell transplant. His brother and him are being matched as we speak. Please pray hard that they are a match. If so then once the doctor approves and we get finances in line we can go through with this.

Michael is a fighter, Michael is our Miracle. He has made it this far and God has watched over him. But now is when we really need your help. We need to raise 10,000 for gas back and forth. We need to raise 5,000 for a special cleaning service. We need to raise a down payment, lets start with the minimum 25,000 and when we know more we can ask for more. We need to raise whatever the doctor tells us the cost is if your insurance isn’t able to be fought to pay for it. We really need your help. Every dollar counts in the fight to save little Michael. His disease is rare and would eventually take him to heaven. As greedy as this sounds I want him here with me as long as possible and this bone marrow transplant gives us that hope. Hope for a future, hope for our son to be able to grow up.

Anxiety is high in this house, worry is deep. We need support, we need you.

Please share Michaels story with everyone you know, please help us in any way possible.

http://www.youcaring.com/savelittlemichael

follow us on facebook http://www.facebook.com/savelittlemichael

send Michael letters of encouragement, or small gift cards for presents as he goes through this tough time.

Help us reach our gas goal and housing goal so that when the doctor says lets do this we are already prepared.

 

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Life with MNGIE

Michael has now been diagnosed with the rare disease MNGIE which has only been diagnosed in 70 other patients. So before I thought FPIES was rare, this is even rarer. It is something that he will not grow out of as it is an error in his DNA. MNGIE is associated with many things, it explains his seizures, it explains that his bodys’ cells (mitochondria in the cell) are just too tired to break down food, so his body rejects it; it explains the weak muscles while he is reacting to a food. We try to keep his life as normal as possible and are not telling him how sick he is, as this is a big enough burden for me and a child should never have to know this type of thing.

Michael knows that he is not normal, he knows that he is different. He begs me for an apple, and I tell him one day we will find an apple that is good for his tummy. He then smiles.

Michael knows that things hurt his tummy but don’t hurt ours, he even thinks that things hurt little brothers tummy, because after all how do I tell Michael that his little brother seems healthy when Michael is so sick. We will be testing Matthews genes to be sure that he did not get the carried gene from Michaels dad, or me. If he tests and they are not present our next step is to see if his cord blood and tissue that we stored can will match Michael so that he can have a bone marrow transplant.

With this disease there is no treatment to help the person get better, just medications to help manage symptoms. If he is in pain, give him pain medication, if he is loosing his hearing, get him hearing aids, when he becomes unable to walk due to the dystrophy of his muscles, get him a wheelchair. Though I am prepared for it all, I do not want it to get that far, I want to halt it by getting him a bone marrow transplant which should help him stay better longer. Another girl with this has her bone marrow drive here.

More information

Our heart is very sad right now, but we are trying our hardest to fight for our son. To get him the help he needs  click here to help.

This Christmas Michael won’t be putting out milk and cookies for santa, instead we will leave him hemp and sugar. Michael wasn’t able to accept the candy cane from santa at the mall, Michael isn’t able to help make cookies or gingerbread house. Instead here we are doing a food free day just as we did with Thanksgiving. We will have our parents over (after they eat breakfast at their own house) to come see him unwrap presents, and when they all get hungry they can go home to eat their supper.

The Muscular Dystrophy Association sees his disease and is willing to help with wheel chair assistance and such when the time comes.

We are trying to get help with other people reaching out for us, to get our community involved. To get the world behind our little boy to help us stay strong.

 

Simple terms: Michaels body has an error in his code, that makes Michael sick when he eats a food. The error causes seizures, muscle weakness, hearing and sight problems, it is pretty much his body shutting down. Now that we no longer have Neocate and they weren’t willing to admit a change to help people like Michael they left us out to dry. Michael is living on hemp and sugar, (Manitoba Harvest Organic Hemp Hearts, and Florida Crystal Organic Cane Sugar) because they are not cross contaminated with anything. Michaels bottles are only ever washed with one type of soap that doesn’t cause a reaction, Michael is washed with one kind of soap that doesn’t give him a reacting, Michaels life is the same day in and day out, because we can’t run to get dinner, or go to chucky cheese.

Just going out to the airport with his body run down caused him to get sick, and he isn’t fighting it as well as we are, because plain and simple his body is just too tired to fight. And we can’t do medications unless specially compounded for him, so he doesn’t get cough medicine like most children or adults.

I don’t even have it in me to call family members and explain what he has because then they will be sad, and by me hearing they are sad I become sad. We are lost and we are in need of HOPE.

Please help us with a Christmas Miracle.

My heart is breaking

Since our diagnosis my heart has been very heavy. This is hard to handle, knowing that Michael is 1 of 71 people diagnosed with the disease makes it so rare, it’s insane. But knowing that a bone marrow transplant may help prolong and make his life easier has helped me to gain strength. Because at the end of the day I will do everything I can to help him lead an easier life. I am his mom, I am his support. I couldn’t do it without our support. We have moms that help me stay strong and help guide us along this path. (FPIES moms) We have family who help us when we are really low.

It makes me feel bad to ask people for money, but at the end of the day there is no way we can make enough to help sweet Michael.

Please pray for a Miracle. Please pray for the help we need.

More later.

A new diagnosis…..

When you hear the words Mitochondrial Disease your heart drops to your feet. It is like hearing your son has a cancer than is not treatable. For Mitochondrial Neurogastrointestinal Encephalopathy there is no treatment except to treat symptoms. Treat pain with pain medication, get a wheel chair when they lose their ability to walk, get hearing aids when they can no longer hear, have therapy the rest of your life, and know that you are lucky to live to 30 years old. Well with Michael if his brother is a correct match and doesn’t have either gene that he inherited from us, with a bone marrow transplant Michael may live a longer more “normal” life.

Michael is living on hemp hearts and sugar. We have found out that one of Michaels main reactors is corn and with Mitochondrial that makes sense as his mitochondria are just too tired to digest carbohydrates and corn is hard to digest. I have learned so much from wonderful moms on our journey, but I am asking everyone for help www.youcaring.com/savelittlemichael as we can not afford this on our own. Thomas and I had Michael as newly weds, we wanted to have children young and we felt ready. Neither one of us knew that we were carriers of bad genes as neither one of us had any major medical issue. We have come together stronger to help our son Michael fight. Starting two years ago I prayed daily for a miracle, part of me thinks that Matthew is Michaels miracle. Matthews cord blood could save Michael. I could have two happy, healthy boys.

There is so much going through my head, and the hardest part about all of this is that we finally found out the week before Thanksgiving. A time to be happy and thankful with family, instead of the typical cooking all day to sit around and eat all day, I blew it off. I didn’t cook anything, in fact my father-in-laws wife dropped off food for us to sneak-eat in the kitchen. We gave thanks that we have our little boy and that we still have enough courage to fight for his life. I saw this coming, ever since we got his genetic profile, just wasn’t sure that both of us had given him the gene. We did, and I feel awful, but I would have Michael all over again.

Michael opens up peoples hearts, he makes you smile even if you are a grumpy man standing in line in the biggest rush of your life. He just does something cute that makes you smile. He calls everyone pretty and thinks that everyone is good. People flock to his smile and say his laugh is contagious. He is my whole world and I love him, this is my letter to the world begging you all to help me save my sons life.

MNGIE is not kind, so let’s fight hard!

FPIES in my new LIGHT

We drove three days to the winter weather in hopes that we would get more help. The sad thing about FPIES is that doctors don’t really know that much about it, once diagnosed you are left in the dark for the most part. I found light in the FPIES Foundation. I was able to talk to one of the board members and even meet Joy in person while we were in Minnesota. Her son Sam has FPIES and is chronic like Michael. Sam and Michael got to enjoy a day together and Sam is now Michaels Forever Friend. When it comes to this foundation, they are able to reach out their hand and give advice. Good advice. They are a group of moms that are here to help support you with passionate words. They have helped me more than doctors have, when it comes to great ideas for food trials. Michael learned of hemp through her, and has passed his first food!

Michael isn’t the typical FPIES child, he doesn’t have multiple safe foods, he just has hemp and sugar now. There are more children like him, because of the foundation I have found others. I would love to meet these mothers in person and have a food friendly play date with our children, but we are all over the United States so we are online with each other 🙂

Michael has greatly improved in his speech since the start of Hemp, it seems he is a completely different child. The idea of this blog is to help increase awareness not only for Michael but for FPIES all together. If it weren’t for a fellow mothers blog http://fpiesmudpies.blogspot.com/ I wouldn’t have found true FPIES strength. I can’t begin to tell you how great it feels to be part of a FPIES family.

“The FPIES Foundation is working on several initiatives that help facilitate awareness to the allergy so that parents are empowered in learning about and caring for their child living with this rare food allergy, that all children affected by FPIES have adequate management and treatment guidelines with their interdisciplinary medical team, and that all symptoms along the spectrum of food protein induced gastrointestinal conditions (including chronic FPIES)are recognized and classified correctly so as to improve the standards of care and increase the quality of life of those affected by FPIES.”

We did another news story through Inside Edition, it should be on air soon. As soon as I find out I will let you all know. But people like myself need to have our stories heard. FPIES isn’t glam and glory like some make it out to be, FPIES changes your whole life. You can’t go to a store without worrying about your child getting a trigger food and having a reaction, we can’t go to the beach in sunny Florida because if he gets any water he goes into an awful reaction, you cant treat him to ice cream when he’s sick or a popsicle when he’s hot. You can’t even give your child medication without having it specially compounded for them, due to all of the fillers in medication now days. When getting ready to trial something you have to write the company and verify that there is no contamination of another food in the single ingredient food you are trialing. Michael is allergic to corn and that explains why in 8 ounces he is supposed to have 7 scoops and is only able to handle 2 scoops, due to that we may have failed more foods because his bucket was already full.

May parents have come up with a wonderful idea……We need companies to wake up and maybe a new company to be willing to create a special product. One where it starts with an amino acid mix for protein, and then you can choose a fat, a carb, vitamins….etc. Because children and adults can react to even trace amounts of protein. Once a protein even when washed out or baked, etc there is still trace amounts you can react to.  I am allergic to nuts, I can’t fly on southwest airlines because of peanut dust, I can’t have peanut oil because you claim the protein was removed, yet I STILL CAN”T BREATH! But I am lucky because you can pump me full of medications to make me survive my reaction. When it comes to FPIES there is NOTHING you can give them to stop a reaction from occurring. When I was given a drug called Prometrium (contains peanut oil) I ended up loosing a pregnancy. I didn’t react in my throat and mouth like normal because the coating wasn’t peanut related. But I had killer kidney and back pain about 5 hours later, and had stomach pain and horrible diarrhea for about 5 days following. I knew if my body was going through this small amount that Michael and other children must feel like this but much worse when eating a food that they react to.

FPIES is SERIOUS it is like anaphylaxis but of the gut, it causes severe pain and diarrhea along with vomiting to bile, it causes leg pain and mood changes. When Michael is reacting he covers his ears, he tip toes, he gets angry for no reason, he forgets things, he can even lose a milestone. This isn’t normally mentioned because it doesn’t happen with all children, but Michael looks like he has autism or ADHD when he is reacting.  He pinches me to convey to me how much pain he is in, and I let him because that’s his way of informing me. It’s not bad parenting it’s what we know. When he isn’t reacting he is your normal happy child. When he’s reacting we can be out getting our toilet paper at Target and out of no where a cramp happens and he cries, I get told my son is a brat and I need to punish him, he’s not acting out, he’s in PAIN. Our whole world has changed, we can’t snack on the couch or eat dinner at the dinner table, we sneak eat in the kitchen because he wants to eat and it breaks all of our hearts that he can’t. We can’t let him get crumbs. When we have people over for holidays we tell them to eat before they come because this house is not going to celebrate around food, its just too hard.

Michael now has a little brother Matthew, and we don’t see signs of FPIES but are keeping an eye on him (he was placed on an elemental formula from birth under doctor supervision). But with Michael even on Neocate Infant we had severe crying, and odd stool, along with other things. He still didn’t sleep like a “normal” child. Can I tell you how much I hate telling people that I think Matthew is normal….not like Michael? It hurts. Matthew sleeps and when he cries it’s because he either needs a diaper change, or a bottle, or just to be simply held. Then within 30 seconds there is no more crying, he’s sleeping right now, he’s always sleeping and when he’s up he smiles. He’s only a month old. This is unfamiliar to me because Michael cried 20+ hours a day. Michael wasn’t comforted by a snuggle or by getting his gas out, after he had a bottle he was super fussy, there was nothing I could do to get him to not cry. But I still tried, I walked around the house doing a little bounce step with him on my shoulder being cuddled in hopes that at least he would know I love him and am trying my best to help him. I would call for help just so I could get away from the scream cry for 5 minutes to keep my sanity. But then I would worry that something was going to happen. He puked all over everyone all the time and had blow out diapers that now my sister in law is scared to hold Matthew because he may be like Michael.

Michael reacts to Food, and even cross contamination of food, he reacts to medications, he reacts to soaps, lotions, EEG glue, that’s just through skin contact….his body is reactive, this is not a joking matter. When he’s reacting to a food, besides the diarrhea and vomiting and mood changes, his body swells, he looks pale and his eyes sink in, they are purple underneath, his eyes look lost, he can’t sit up without additional support, we have to carry him around the house or around a store, it’s not easy. This is ugly to imagine that’s why I don’t post pictures of him reacting,

People say this must be so hard….and I won’t lie it is very hard, but this is also all I know and all I will know. I just wish that someone out there could help these children, I wish that we had more answers but we don’t. And what I hate more than anything is FALSE HOPE. Don’t tell me you are researching to CURE FPIES, because we don’t even know what causes it, or how to treat it.

Think for a second about vitamin C….. I don’t know about you but I think of Oranges. That’s not true when in foods or vitamins it’s normally corn related. Maybe if America (not that its just America) would stop mass producing things and go back to the good old days where families actually farmed and things were more pure….people wouldn’t be so sick, it wouldn’t be so hard to find safe food for children like Michael.

 

 

But back to what’s needed, we need more people willing to talk about their stories, we need more FPEIS awareness, we need helping hands,  that includes a great community focused organization like The FPIES Foundation.

Thank you all…..more to come….

 

 

Stuck somewhere between here and there

We are still in a tough spot. The company doesn’t want to fulfill their roll of helping children like Michael have a safe food. They make false promises and give us all false hope. In the mean time Michael has found two foods hemp and sugar, This is NOT enough to keep him alive when the formula runs out and we all know that is fast approaching,. To all the people out there we still need your help and we are still trying to help others in need. I will be updating much later but as the days grow closer to the expiration my heart breaks more and more. Please keep spreading the word. Please we need your help.

Thanks and Love to all!

Mayo Clinic and VENT to Ignorant people

So we got appointments in the Mayo Clinic, and made the three day drive up to Minnesota. We stopped in the twin cities to see friends and family and surprise my cousin for her wedding. After all I didn’t know how to thank her for setting all of this up for us.

We went to around three to five doctors a day for 10 days. Michael had his maximum amount of blood drawn for 6 of those days. Michael had urine testing, an MRI, a lumbar puncture and an endoscopy and colonoscopy. All to find out that he has FPIES, there was talk about Michael being worse off than children with FPIES, so we tested him for everything possible and thank the Lord he only has FPIES and not something worse.

Though the Neurologist is very concerned about his tip toeing and his mood due to his seizure from the new label Neocate production, he claims there’s not much to do unless Michael get’s worse at night. So we will be watching him for the next week and taking videos. We are also waiting on some more Mitochondrial testing to come back, so far it has all been negative. We were hoping to find something that we could treat.

For now we are to continue to trial new foods, to hopefully find enough safe foods by the time the formula runs out. The company is unwilling to fix the problem even though they admit that it does smell, taste, feel and mix different. They claim that there has been no change. When really we all know there has been. The important thing to keep in mind about the Neocate problem is that it’s not just children with FPIES reacting, there are children with GP, Allergy, MCAD, and many more things. We are not alone in this fight. Even though I hate people knowing who I am as I enjoy being a small town mother I had to step up and be these children’s voices, they need to be heard! LOUD AND CLEAR AND I CAN DO THAT!

Michael is so happy to be home, and sleep in his own bed and have all of his toys around the house. And though I am stressed because I don’t know what we are going to do, I know that God is watching out for us. I know that my son was born for a reason just like all of these other children to be somebody and let the world know something, I just don’t know what it is. Hopefully some type of a wake up call on all of the medications people take and the medications on top of those to help with side effects, and all of the things they put into our foods now days. No Michael doesn’t get GMO foods, but maybe decades of eating these worsening foods is what causes children like him. WAKE UP WORLD!

Also it has come to my attention that people think we are scamming, or that it’s not a rare disease. I would like you all to know that I am fighting for my sons life ant that if this were about money I would have started legal matters against the company, but instead I have just been crying for them and begging for them to fix it! FPIES is very rare, not as rare as five years ago but still very rare, and there are NO treatments except avoiding your trigger foods, well I haven’t even listed all of them but as you can see we have a lot.

And my son does drink from a bottle, but his teeth (thank you for your concern) are healthier than other 3 year olds because that’s all he gets is Neocate and Water, not junk food of acidic foods that could hurt his teeth. Also please if you would like you drink this from a cup and then from a bottle and see how the bottle masks its flavor. To add to that we like to see how much true intake Michael gets in a day as we try our best to keep his weight up because every time he reacts he looses 5 pounds like it’s nothing. And he uses a stage two dr. Browns nipple, he can’t even tolerate the larger ones. So please stop saying things like “those parents are lazy, and they don’t even make nipples large enough for a kid that size”. You have no idea how much I work at keeping my son healthy, I have not once slept through the night and my son is three and a half, I have not once had a night just to ourselves, we have not once gotten to go out to a restraint just to enjoy food, and we don’t go through drive through like you to eat in our car, as our cars are food free zones. My life is different because of Michael and his allergies, but I would not take one day of it back as he is my whole world and even when he is sicker than sick because we let him eat a food, puking on me having ten explosive diarrheas, screaming and crying for three days straight, I look at him and see this miracle that the Lord has given me. This child that has made me a better person, and has taught me not to judge. I wish for you all to spend one day with Michael and see how pure he is even if you are rude and mean to him, he still smiles at you.

To everyone who has supported us, I can not thank you enough I am sorry for my rant but these people need to know that I am in no way LAZY. You who have helped us have made our days easier, I wish there was better news I was telling you like we had that Ah, hah moment we were looking for, but we didn’t. Please continue to give advice, and continue to pray for Michael, and keep us in your thoughts. It makes me feel better knowing that people are thinking good things about us and not posting about my son drinking from a bottle, it’s like really? Who cares? His doctors don’t and we like him drinking it because if not he’s going to be tube fed and will have nothing by mouth, imagine what that can do to a child who is used to drinking his only source of nutrition, taking that away from him would be punishment.

Please continue to support us and know that I do appreciate all the nice things people have said, and all the advice even if it doesn’t work it shows you are trying to help, and I really appreciate that.

So THANK YOU FROM THE BOTTOM OF MY HEART!

-Jennifer Gonzalez

 

so many things I wish to say back to rude comments but I just don’t have time to waste, so like your mommy always said, “If you don’t have anything nice to say, don’t say anything at all.” 🙂

Improvement and Movement

So I have so much to tell you and I will write more tomorrow when we get home from seeing a genetic doctor and the Miami Childrens Hospital!!!

The Local S-2o IAFF as you know is behind us and now we have the www.floridapublicemployees.com behind us. Robert is getting a coalition going for us. The

 

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