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.

 

From Mommy to Son

Dear Michael,

There is so much that I want to say to you, but I just can’t bring myself to say it. Maybe the time will come that I have enough courage to tell you.

“I will fight with you and for you for as long as you shall live.”

As your mother I have so many dreams for you,

I dream that one day you can live a normal life, even if for only one day.

I dream that you can do the American things, such as go to the movies and eat popcorn, or the ballpark and eat a hotdog.

I wish for you to one day say a foods name (any food) and me not cry.

I wish that someday we can find you a cure.

I wish for you to come home from kindergarten, blushing telling me how you kissed (insert name) under the bleachers.

I wish that one day you will grow older and that you will sneak my car out just to be sneaky.

I wish for you to call me in your desperate hour because you drank but don’t want to drive, because I will be there.

I wish for you to learn how to play sports, because I will be there cheering for you.

I am your cheerleader, I am your best friend, you are my whole world.

I want Matthew to grow up and know his big brother, not know of his big brother.

I want to be able to look at you and not at your grave.

I wish for you to get married and have kids of your own, because after all I would love being a grandma.

These are all just dreams of the future as we don’t know when your time will come, but I do know that I can not let it be now.

I know that I am weak, and that I can not loose you.

As I look into your eyes I see so many things.

I see beauty, and trust.

I see happiness even though your world has been rough.

I see the want to learn and do more.

I see that you love me too.

I am so sorry that mommy and daddy gave you bad genes, I know one day you may hate us.

I am okay with that, because it means you are old enough to be mad and understand.

If you are old enough to be angry with us and understand that means something went right, somehow you are with us.

God sent you to me, because he knew how much I would love you.

God sent you to me, because he knew I would never stop fighting for you.

God sent you to me, because he knew I needed you.

As I look at your 4 month old little brother, it hits me.

He sleeps through the night,

he doesn’t cry or vomit, or have diarrhea.

He has brown hair and brown eyes and seems nothing like you, but has that same lovely look in his eyes

He smiles, and has tummy time,  and loves laughing with you

But for all the sleepless nights with you and all of the horrible (I wish I could forget reactions) you and I have a special bond

I want you to know that I prayed for you

And I prayed for your little brother

I would pray every night that “If a younger sibling could cure Michael to please send us another Miracle.”

That Miracle will happen.

This is my promise to you.

Things I want to say

There are so many things I want to say. So many things that need to be heard.

My son reacted to my breast milk and doctors told me that wasn’t possible. Now our expired supply of formula is running out and there is no more to be found. I thank everyone for the support we had when we started this but now we need our followers to pull together again and show us love and strength.

After my son was diagnosed with Mitochondrial disease (MNGIE) I researched even more than ever before. The only things that they treat with this disease are symptoms. If he is in pain, give him pain medication, if he starts to lose his hearing, get hearing aids. If he can no longer have the strength to walk get him a wheel chair. This breaks my heart more than anything. Then I found that we could try a bone marrow transplant and it could (kinda reset his DNA) help him. We were given his little brother out of no where after being told that we couldn’t have any more children. Out of the blue God gave me a second baby. I prayed that if a second one could help Michael to please grant us a miracle. We went to Mayo Clinic last year and came home, when we got home we found out we were 12 weeks pregnant.

I can tell you that being able to hear Michael cry for the first time and hold him for the first time was the best feeling I had ever had. Then I got to do it again with Matthew. The hardest thing that my heart has had to feel is being told my first son is very ill. Though I knew he had to be more than just FPIES, it still hit me hard. I am happy to know what we are up against but very frightened.

We don’t have enough money for Michael to get a bone marrow transplant, we need your help. Insurance says that it’s still experimental and therefor won’t cover it. There are things we need to do in our home also to make Michaels life easier, such as pulling up the carpets and hard wood flooring the house, another thing we don’t have funds for and are asking you for help with.

Can you all help me reach out to people who can help us? I am a mother begging you for help.

 

Michael just woke up, more later

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!

Life with FPIES

What is it like to live with FPIES? Well I can’t tell you anything except the mothers perspective, my son would tell you that he doesn’t know any different and that he just wants to eat normal food with the rest of the world.

Lets start from birth…. Michael was born full term but was only 4lb4oz, so right away the hospital wanted us to supplement my breast milk with milk formula. He wouldn’t drink more than 1/2 oz and was being fed every three hours. For some reason even less than a week old he knew something was wrong…..but I didn’t. I did everything the Doctors told me to do. I rocked him, I bundled him up, I did my shake/walk, I turned the dryer on to give him noise, we tried the radio, I tried a car ride, I tried it all. After a couple weeks of his horrible stools his bum was now chemically burned. So our Doctor at the time told us to spray dumboric acid on it (yes for athletes foot) and that the acid would neutralize the burn….He was by far WRONG! So after being told that it’s colic while I was calling them day in and day out we decided to get another opinion. This doctor told us about our “miracle cream” that we still use to this day during a reaction. He explained that he doesn’t know what it could be besides colic but that he does think something else is going on. To keep a diary of the times of day he was crying….

Well he was crying for almost 20 hours a day, I felt hopeless. Nothing I did seemed to make him any better, but I kept trying anyways. I walked with him, I watched him, I bounced him so gently, I did the bicycle move with his legs…..I just kept trying.

At almost two months old he had actually cried so much that he coughed up blood….my husband was in the shower as he just got home from a fire. I ran Michael in to him and said Thomas what do we do?!?! Of course I knew to bring him to the ER but do we drive or do we wait for an ambulance to arrive to bring him in? I can get there faster and the bleeding had stopped. Thomas first thought (just as I would have I guess) did you drop him? I looked at him like I was going to hurt him (must be where I got my now famous mom look from) and said no, he was crying, and he stopped for a second…..next thing I knew there was blood coming from his mouth and here look I have it on my shirt. So we brought him to the hospital where he was then admitted for his first time.

The GI doctor came in and told us that he had cried so much he actually broke a blood vessel in his throat and that is where the blood cam from, but that he also has blood in his stool. She said that he is allergic to milk and that most children allergic to milk protein are also allergic to soy. So she placed him on nutramigen, we thought that was expensive at fist look, but we went to babies r us and bought as many cans that we could afford to get us through for about two weeks. He was better for the first 3 days then started to cry like he used to. When I look back at pictures for all of this time frame I can see how swollen and sick he looked…..but I didn’t know better, and neither did his doctors.

So then at our doctor appointment. the 4th one that week our GI put him on Neocate Infant and told us that our insurance should cover it or to get Medicaid. Well we didn’t qualify for Medicaid; as we made barely too much, and our insurance denied it as it’s not for an inborn error of metabolism. We made it work because it was better for Michael. He started to do amazing, was finally gaining weight, actually made it onto the growth charts around 4 months old, gained above the 3rd percentile around 6 months old and started to really thrive.

Michael didn’t get tummy time like most children, because just the thought of putting him on his tummy felt like cruel and unusual punishment. We did give him mylicon for his gas that seemed to help until later on he built up a reaction to that, come to find out there are fillers in medications…

We got Michael a bouncer because bouncing out his gas seemed to help….though he still wasn’t tall enough so we had to put a heavy duty couch pillow under it. He fell asleep for more than 30 minutes…..it was amazing.

Then right around 10-11 months old, Nutricia added DHA/ARA to their Infant. He started to react, we were again clueless. Then realized the DHA and ARA was new…..so his doctor switched him over to Neocate Junior Unflavored and he was better again.

During all of this his first GI said that if we put rice in his bottle he would sleep better and be happier…..she was wrong…he was swollen and sick and I told her. She assured me no one could be allergic to rice as it is hypoallergenic… and then started pushing us to try stage one baby foods. I feel as if maybe Michael wasn’t pushed so hard so young on all these things that he wouldn’t be allergic to as many things, though that’s just a theory.

Around age 2 Michael realized that children should get to eat with their parents, and they should get a cake for their birthday…. Michael got a plastic cake that sang to him. So life was more complicated because he was starting to understand that everywhere has food. We are unable to eat out of the kitchen unless it’s on the dining room table and we clean the table and vacuum under the table and pick up any pieces left behind….We don’t eat in our car like most americans, so finger food is not really around in this house.

Around 2 1/2 Michael was diagnosed with FPIES, we were told that it’s not just multiple food protein allergies but that it’s FPIES. Wow we finally have a name!!! I had been researching this FPIES thing anyways curious and believing this is what he had.

By age 3 I had it all figured out, sure Michael still didn’t have a safe food….but he had his water and water can turn into ice. I shaved ice and made a Mickey cake! It was great! I put glow sticks inside that were pre broken for color! We had the family here and chopped it up on our table! It was amazing fun!

As much as family gets it and tries to understand it still goes over their head, and I don’t expect many people to understand the way I do, as I am the mother I have put hours upon hours into research. So much research that my sons doctor told me that’s what I should do, I should get my Ph.D. in medical research because I am great at it….I said nope I want to be a Nurse Practitioner and help children like Michael with rare diseases. I can make their life just a little more enjoyable….

Now Michael just turned 4 and we have his first safe food….HEMP! Say it loud and say it proud! We have a food!!!!!! I am jumping for joy!!!!! But his only safe food is now expired so we really need his sugar that we are trialing to be a pass, then we really need to find a vitamin. I will make Michael survive and I will not let him expire, or become so sick….I will not. I promised him that he would be okay and we would make it through this……and after all I am his mommy I am never to break a promise!

More later….

Today….the expiration date Nutricia tried to put on my sons life

Today is October 22nd, the expiration date of Michaels only complete food source. Since our learning of this back in November of last year we have found Hemp and Sugar….which brings us closer to a hope of keeping him healthy and happy. Michael is our brave super hero. Even though he has been through so very much in his 4 years he is still the sweetest little boy.

 

We have been in contact with the company since day one of our figuring out that the new label formula (that they claim nothing had changed with except the appearance of the label) and been in contact with our representatives and the FDA. The company states that nothing in their label released in August 2012 had changed but that their yet again new label starting in January of 2013 has in fact changed….maybe they are just learning to cover their hiney. The vice president Steven has been in our house and even for himself stated that the old label is whiter and tastes like potatoe water, that the new label is more yellow and tastes a little sweeter and does go rancid as we saw with the formula I made that sat out at room temperature, and that the new and improved label is more yellow and tastes just like regular milk you buy at the store. I know that the thing we would complain about is taste and that is why Michael will drink it out of a bottle instead of a cup like he does with water. So I know that’s why they made the change. I am sure profit has something to do with it as well.

Today hits hard because I am scared, yes I tell everyone I am fine, and we are getting through this, but deep down I am so scared that we are going to loose our son and I can’t do that….I can’t let that happen. I will fight and be their voice and try to find answers.

I have found strength in some fantastic FPIES moms with the FPIES Foundation, it makes you feel like family, their support is amazing.

We are struggling with medical debt, have maxed out our credit card, had to get another credit card, are eating boxed meals for Thomas and I just to be able to supply Michaels diapers, and food trials and all of our bills. Please help us with prayers and kind words. Ignorant word don’t hurt me anymore it just makes you look ignorant.

My life is better because of Michael, and Michael has touched the hearts of everyone he has met along this journey, local people, people in many other states, children, adults, doctors across the country. Please know that we are doing out best to keep him alive, and I will continue to fight with everything I have.

more to come…

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!