Help us give Liam the chance at more tomorrow's

Anaphylaxis is a life threatening allergic response that affects the whole body. It can cause swelling anywhere in the body, face, lips, groin, swelling in the throat that can lead to a total blocked airway which can quickly become fatal, it can cause hives/welts like blisters throughout the body, flushing of the face and body, low blood pressure, fast heart rate that can result in loss of conciousness, wheezing, nausea, vomiting, severe abdominal pain, diarrhea, dizziness, sensation of impending doom, blood shot eyes, or even a fever. This is considered a medical emergency as anaphylaxis can quickly become fatal & if not immediately treated with an epinephrine auto injector, then the person can go into cardiac arrest, shock, and die. People can have anaphylactic allergic reaction for many reasons beyond a food allergy, like medication, bug bites, mast cell activity, and other immune responses.

Liam was diagnosed very early on with multiple life threatening food allergies as a baby. As the months went on, liams list of food allergies continued to grow at an alarmingly fast rate. His drs feel that there was major exposure through the skin since he was covered in eczema (had no protective barrier) and his skin was always so raw and exposed. As of today Liam has over 50 life threatening food allergies along with intolerances and sensitivities and oral allergy syndrome. Several of these food allergies are airborne meaning the simple smell or fumes of someone cooking his allergen would be as if he was eating it by inhaling the fumes and it could send him into anaphylaxis. This has made his food intake very restricted and as you can imagine, he can't go out to many places. He does not have many choices of food to eat or drink as a result of this.

Currently there is no cure for food allergies, but there is however a treatment program that has the ability, if all goes well, to put his body into full remission of all of his food allergies. The So Cal Food allergy institute in Long Beach with Dr. Randhawa. He is the founder and director of the tolerance induction program that has a 99% success rate. For us this is the closest thing to a cure. This means there is hope for Liam. We were fortunate enough to have his health insurance cover the program yearly fee for the first year along with visits, however after the pandemic, their program is no longer in contract with many insurances or coverage options for the following years. Liam started his food freedom journey in january of 2021. After this year not only will our coverage be over, but his insurance will reach a limit and therefore no longer be eligible. After evaluation of all his bodys immune response to all the foods, they initially determined that Liam would take about 6 years to complete the program until he reaches total remission and food freedom. This treatment program (if you look into their website) comes at a very high cost for families. This is because there is alot that goes into play carefully and safely customize and tailor a plan that is very specific to the patients immune response and the amount of allergens and or complications that go into account. The amount may seem unrealistic for some. But when broken down every single cost is explained into detail and as to why. 

While Liam was a baby we quickly noticed that he could not tolerate any sudden temperature changes even by one degree higher or colder than his body temp. He reacted to strong scents, perfumes, pets, and clearly had environmental allergies as well. While Liam began his journey at the SCFAI, we were told that he was one of the "complex cases" and his food restrictions were so great that he needed to be taking supplements to fill all that he was missing. Before even beginning this program, Liam was having daily allergic reactions that often times led us to believe it was through cross contamination or some type of accidental exposure and we quickly found out this was not the case. He was a very hard toddler to diagnose for anyone as he was entirely covered in severe eczema that we were not able to see the manifestations of an underlying bigger problem going on under. We eventually found a great treatment for his skin. This was the ONLY treatment that was able to clear him and keep him clear after a whole 1 year and 6 months of living in painful eczema. We finally had a clearer picture and quickly began to see all the allergic reactions he was having to what seemed like the whole world. His reactions had been getting stronger as they began involving more body systems. They were beginning to mock food allergic reactions. 

After a lengthy evaluation, so many blood testing and appointments, Dr. R wanted to look at every possible underlying reason his immune system could be doing this. 

Liam was recently diagnosed with Mast cell activation syndrome MCAS which has been living in his body from a very early age. MCAS is a rare condition in which the patient experiences repeated episodes of anaphylaxis that can be deadly. He is in a chronic state with the symptoms of anaphylaxis. Anytime a person has an allergic reaction, there is a chemical reaction within the cells that affect the body from inside. When a person is constantly having repeated episodes of allergic reactions, this begins to cause alot of swelling & damage to the insides of the body in every way you can think possible down to a cellular level. 

He was also diagnosed with an immune deficiency in some of our immune systems most important cells. 

People who have MCAS do not do very well tolerating most commercial made medications. Liam has always had a bad tolerance to most meds. Because of this his dr has his medication chemically compounded (made from scratch with only sterile water) resulting in a short shelf life of 2 weeks and requiring us to pay for and fill every 2 weeks.

He is now 3 years old and is currently taking about 20 doses a day of medications just to make it through the day safely. A couple days ago Liam went into anaphylaxis due to an MCAS reaction that once again left our 3 year old gasping for the very breath most of us take for granted. He has had so many near death experiences in his short 3 years, too many blood draws, pokes, scans, lives in hospitals and drs offices so much that it has began to affect him & he is very hypervigilant & afraid. if you are able to help in even the smallest amount or simply sharing in the hopes that someone who can help sees this, we would appreciate it so very much! Please help us secure the funds for not only the food allergy treatment at so cal food allergy institute, but the TPIRC translational pulmonary and immunology research center for his MCAS treatment, his very costly medications every month & any supplies/safe foods or things he needs. 

 Liam is currently going to be on a full pause from TIP until we get his immune levels up, although we are heartbroken, Dr.. Randhawa is confident he can treat liams MCAS and also get him to food freedom at a slower pace. I am choosing to look at this as a silver lining, we now have a little bit of time to secure the funds for the next 6-7 years in the 2 programs scfai and TPIRC  so that we don't have to remove Liam from the program that could save his life due to insufficient funds. Our son is now living in a state where every day he makes it without going into anaphylaxis, it is a win. Everyday he is a walking miracle just fighting for his life. We just want to help our son live to see every tomorrow as is possible as we can get him to. He deserves so much more! None of the things which he has have a cure, but there is treatment and there are medications and we feel very hopeful that we can get him to live many tomorrow's if we just step out of our comfort zone and ask for help. He is suffering but he is pushing and fighting so hard.

I left out so so much because as you can tell there isn't a book that could detail every single thing our baby is and has been fighting his whole life. 

If you find it in your heart to help in whatever way you can, we would be forever grateful. 

I'm positive I left alot of important things out as we currently are tending to our son recovering after anaphylaxis only a few days ago. I will try my best to always keep an update & be sure to share every single thing you all will help us pay for as we move along. 

A thank you will never suffice especially to all those of you who have already reached out and helped us so so much along the way! Thank you in advance for helping us help our baby see many many more tomorrow's  

Sincerely,

Lulu & Danny