Help Leah Beat Multiple Illnesses

$4,340 of $25k goal

Raised by 57 people in 32 months
Darci Joy Semegi  FOUNTAIN VALLEY, CA
I have been battling mysterious, disabling health problems for 20 years. I progressively got diagnosed with 6 autoimmune diseases - including Lupus and MS - along with traumatic brain injury, Lyme disease and 9 other infectious diseases after I was in a coma for a month. I have been aggressively treating out of my own pocket for 3 years resulting in bankruptcy, and still endure over 50 symptoms a day including seizures, paralysis, and severe pain requiring 24 hour care by my family.

I haven't been able to eat in 5 months and am currently on IV nutrition (TPN). My pancreas is shutting down rapidly, 70% gone, and will need a transplant within 6 months if the atrophy can't be stopped.

I have exhausted all treatment options available in the US and am raising money to seek treatment at a clinic in Europe with a good success rate and promising treatment options not available in the US yet. My family, team of doctors, and myself all feel this is my last hope at obtaining remission and saving my pancreas.
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Update 3
Posted by Darci Semegi
5 months ago
1
1
Hey everyone, thank you so much for your outpouring of love and donations. You have no idea how touched I am. Just a quick update, I was hospitalized for a week and got another central line placed and am currently recieving TPN, a form of intravenous nutrition until my doctors can figure out why my body can't tolerate foods/liquids. The day I was discharged from the hospital I became an auntie again to another beautiful niece. On my way from the hospital to visit my sister and her family, I suffered a TIA or "warning stroke". I'm in serious need right now for any kind of help to get me to see the specialists I need to as my insurance is not covering the majority of visits and treatments.
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Update 2
Posted by Darci Semegi
6 months ago
Hi, this is Leah giving an update. A lot has happened (mostly good!) since this page was started by my friend Darci. I made a lot of progress in treatment and got really close to regaining my life, but due to financial reasons I stopped treatment (because I was feeling well) and am now paying the price.

My doctor isn't sure what's going on, but something caused my body to start rejecting amino acids. Humans don't make amino acids, we have to get them from our diet in order to make protein in our bodies. I haven't been able to eat without throwing up for over 6 weeks, and my body is attacking itself to get the nutrition it needs. To give just one example, I've been bed bound for 3 weeks straight and one of my metatarsal joints in my foot is deteriorating, which the doctor said is more commonly seen in high impact athletes with years of overuse.

SInce I'm not getting nutrition it's throwing off a lot of other things in my body, too. I started having seizures again, up to 10 a day. My doctor is very worried and says I'm at a critical time where we can come up with an agressive action plan after testing, or spiral out of control again if we delay treatment any longer. Since I was doing so well, I had only been doing phone appointments and she needs me to travel to see her in office before she can prescribe treatment again (I live 9 hours away from my doctor). I need a caretaker right now which makes traveling diff icult. Aside from my doctor, I have referrals to 7 specialists in next 2 weeks, some of which don't take my insurance and I have to pay out of pocket for. I'm on permanent disability with a very limited income. I've already paid $40,000 of my own money for treatment and now I'm bankrupt. My family has paid in almost the same, if not more, and can no longer help pay for my treatment.

I had my second port-a-cath removed back in october, and we're looking at the possibility of placing another to get TPN, or total paraenteral nutrition, an intravenous form of nutrition, as well as going back on high dose IV antibiotics, which may not be covered by insurance also. My vitals are extremely low, and we're trying to get them stabilized for now.

No one wants to be in the position of asking their family, friends, and strangers for financial help. But, your will to survive overpowers your pride and so you humble yourself, believing in the kindness of others who also want to see you survive. No amount is too small, if you can bypass the cost of a cup of coffee to donate, it would mean the world to me.
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Update 1
Posted by Darci Semegi
31 months ago
An update on Leah's battle with Lyme disease:

Since that first incident at work, Leah has had a significant increase in neurological symptoms, impairing her speech, thought processes, cognitive ability, memory, and motor skills. She now has irreversible muscle twitching and spasms, nonstop pain, rendering her unable to walk most days. She has had a total of 6 seizures, and is now starting epilepsy medication which she will most likely be on the rest of her life.

She recently had a head CT repeated which showed cerebral atrophy and white matter disease, an irregular EEG (brain wave monitoring, much like an EKG) and is awaiting the results of an MRI to check for suspected lesions on her brain due to her symptoms.

Her case has gotten so severe it has been immediately accepted by the leading Lyme literate doctor with the highest success rate of treatment, who normally has a very long waiting list.

Please help support her on her journey to better health before her symptoms worsen.

With love and gratitude,
Thank you
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$4,340 of $25k goal

Raised by 57 people in 32 months
Created April 01, 2014
CL
$20
Cory Lamb
19 days ago
KE
$30
Kimberly Evans
3 months ago
MH
$50
mari haig
3 months ago
LA
$500
Lindsay Adamski
4 months ago

Keep fighting Leah!

EC
$20
Ellery Connell
4 months ago
$20
Anonymous
4 months ago
KE
$100
Kenneth Emanuel
5 months ago
EN
$100
Eric Nielsen
5 months ago

Leave a comment

LA
$50
Leigh Ankers
5 months ago

Get well soon x

$25
Shannon Strazzulla
5 months ago
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